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Major Birth Defects Data from Population-based Birth Defects Surveillance Programs in the United States, 2007-2011 The introduction, data collection procedure, and birth defects codes for the state-specific birth defects data are available in the article, “Birth Defects Data from Population-based Birth Defects Surveillance Programs in the United States, 2007-2011: Highlighting Orofacial Clefts”. Additional information and program contacts on population-based birth defects surveillance programs are available on pages S116-S170. The state-specific birth defects tables were prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and approved by the state programs in August 2014. The 39 population-based birth defects programs contributing data include: Arizona Birth Defects Monitoring Program; Arkansas Reproductive Health Monitoring System; California Birth Defects Monitoring Program; Colorado Responds To Children With Special Needs; Delaware Birth Defects Surveillance Project; Florida Birth Defects Registry; Metropolitan Atlanta Congenital Defects Program (Georgia); Illinois Adverse Pregnancy Outcomes Reporting System; Iowa Registry For Congenital and Inherited Disorders; Kansas Birth Defects Information System; Kentucky Birth Surveillance Registry; Louisiana Birth Defects Monitoring Network; Maine Birth Defects Program; Maryland Birth Defects Reporting and Information System; Massachusetts Center For Birth Defects Research And Prevention; Michigan Birth Defects Registry; Minnesota Birth Defects Information System; Mississippi Birth Defects Registry; Nebraska Birth Defects Registry; Nevada Birth Outcomes Monitoring System; New Hampshire Birth Conditions Program; New Jersey Special Child Health Services Registry; New Mexico Birth Defects Prevention and Surveillance System; New York State Congenital Malformations Registry; North Carolina Birth Defects Monitoring Program; North Dakota Birth Defects Monitoring System; Ohio Connections For Children With Special Needs; Oklahoma Birth Defects Registry; Puerto Rico Birth Defects Surveillance and Prevention System; Rhode Island Birth Defects Program; South Carolina Birth Defects Program; Tennessee Birth Defects Registry; Texas Birth Defects Epidemiology and Surveillance Branch; Utah Birth Defect Network; Vermont Birth Information Network; Virginia Congenital Anomalies Reporting And Education System; West Virginia Congenital Abnormalities Registry, Education and Surveillance System; Wisconsin Birth Defects Registry; and the United States Department of Defense Birth and Infant Health Registry.

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DATA S1

Birth Defects Research (Part A) 100: S1-S170 (2014)

ArizonaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)ArizonaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)

Maternal Race/Ethnicity

DefectWhite,Non-Hispanic

Black,Non-Hispanic Hispanic

Asian or PacificIslander,Non-Hispanic

AmericanIndian orAlaska Native,Non-Hispanic Total** Notes

Anencephalus 180.9

31.5

412.1

10.6

31.0

661.4

Anophthalmia/microphthalmia 150.8

10.5

231.2

21.3

10.3

430.9

Anotia/microtia 150.8

00.0

281.4

31.9

41.3

501.1

Aortic valve stenosis 361.8

31.5

432.2

10.6

72.3

901.9

Biliary atresia 50.3

21.0

70.4

21.3

31.0

200.4

Bladder exstrophy 40.2

00.0

40.2

00.0

00.0

80.2

Choanal atresia 201.0

31.5

150.8

10.6

10.3

430.9

Cleft lip alone 723.6

42.0

492.5

10.6

175.7

1443.1

Cleft lip with cleft palate 1055.3

94.6

1537.9

116.9

3913.0

3257.0

Cleft palate alone 1005.0

63.0

954.9

127.5

144.7

2335.0

Coarctation of the aorta 1035.2

94.6

864.4

53.1

144.7

2174.7

Common truncus (truncus arteriosus) 70.4

00.0

90.5

10.6

20.7

190.4

Congenital cataract 60.3

00.0

150.8

00.0

10.3

240.5

Craniosynostosis 10.3

00.0

00.0

00.0

00.0

10.1

Diaphragmatic hernia 392.0

21.0

492.5

21.3

82.7

1042.2

Ebstein anomaly 150.8

00.0

140.7

21.3

41.3

360.8

Encephalocele 100.5

10.5

180.9

21.3

51.7

360.8

Esophageal atresia/tracheoesophagealfistula

502.5

52.5

402.1

10.6

31.0

992.1

Gastroschisis 934.7

105.1

1326.8

21.3

196.3

2685.7

Hypoplastic left heart syndrome 673.4

94.6

412.1

42.5

134.3

1342.9

Limb deficiencies (reduction defects) 392.0

105.1

603.1

21.3

82.7

1232.6

Omphalocele 432.2

31.5

331.7

74.4

41.3

912.0

Pulmonary valve atresia and stenosis 814.1

84.1

874.5

74.4

165.3

2044.4

Pulmonary valve atresia 452.3

42.0

432.2

53.1

82.7

1082.3

Single ventricle 110.6

10.5

150.8

10.6

00.0

280.6

Spina bifida without anencephalus 643.2

42.0

753.9

31.9

165.3

1683.6

Tetralogy of Fallot 864.3

63.0

794.1

74.4

155.0

1984.2

Total anomalous pulmonary venousconnection

101.3

11.3

101.5

00.0

32.6

251.5

1

Transposition of the great arteries (TGA) 794.0

126.1

844.3

53.1

82.7

1924.1

Dextro-transposition of great arteries(d-TGA)

512.6

52.5

482.5

21.3

41.3

1132.4



ArizonaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Tricuspid valve atresia and stenosis 40.5

00.0

60.9

00.0

00.0

100.6

2

Tricuspid valve atresia 40.5

00.0

60.9

00.0

00.0

100.6

Trisomy 13 160.8

42.0

191.0

74.4

00.0

461.0

Trisomy 18 361.8

42.0

321.6

53.1

82.7

851.8

Trisomy 21 (Down syndrome) 23311.7

199.7

25713.2

1610.0

3612.0

57012.2

Total live births 198888.

19686.

194791.

15951.

29929.

466158.

*Hypospadias prevalence per 10,000 male live births**Total includes unknown and other maternal race/ethnicity



ArizonaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)ArizonaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)

Maternal Age (years)

Defect Less than 35 35+ Total NotesTrisomy 13 29

0.7172.7

461.0

Trisomy 18 531.3

315.0

851.8


26242.4

57012.2


61830.

466162.

**Total includes unknown maternal age

Notes1.Total anomalous pulmonary venous return was added to the Arizona Birth Defects Monitoring Program in 2010.2.Tricuspid valve atresia and stenosis was added to the Arizona Birth Defects Monitoring Program in 2010.

General comments-Arizona Birth Defects Monitoring Program data include only confirmed cases with 'most likely,' 'compatible with,' 'probable,' or 'precise' diagnosis.'Possible' diagnoses are not included.-Arizona Birth Defects Monitoring Program provides data on 30 categories of birth defects through 2009, 32 categories in 2010, and 33 categories in2011.-Atrioventricular septal defect was added to the Arizona Birth Defects Monitoring Program in 2011.-Fetal deaths are included in this report if there is an Arizona fetal death certificate, regardless of fetal weight or gestational age.-In this data submission, Arizona Birth Defects Monitoring Program adheres to the requested race/Hispanic categories. These counts and rates may differfrom in-state reports where Arizona Birth Defects Monitoring Program categorizes Whites as Hispanic or non-Hispanic, and other races (i.e., Black,Asian, and American Indian) retain the single race code regardless of Hispanic designation.-Registration of liveborn cases by Arizona Birth Defects Monitoring Program requires an Arizona live birth certificate.-Terminations are not included in Arizona Birth Defects Monitoring Program data reports.-Through 2011 Arizona Birth Defects Monitoring Program included double outlet right ventricle codes as part of the transposition of great arteriescategory.



ArkansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)ArkansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 463.5

82.1

94.3

00.0

19.7

643.2


82.1

41.9

13.0

00.0

351.8


20.5

209.6

13.0

00.0

432.2


41.1

73.4

00.0

00.0

713.6

Atrial septal defect 46935.3

12633.1

6933.0

2677.6

438.6

69435.2

Atrioventricular septal defect(Endocardial cushion defect)

997.5

256.6

125.7

411.9

00.0

1407.1


20.5

21.0

13.0

00.0

100.5


10.3

10.5

00.0

00.0

50.3


30.8

00.0

13.0

00.0

120.6


82.1

52.4

13.0

00.0

844.3


143.7

167.7

13.0

00.0

1165.9


195.0

104.8

00.0

19.7

1316.6

Cloacal exstrophy 10.1

41.1

10.5

00.0

00.0

60.3

Clubfoot 24618.5

5213.7

3114.8

38.9

19.7

33316.9


174.5

136.2

00.0

00.0

1447.3


20.5

31.4

00.0

00.0

150.8


143.7

62.9

38.9

00.0

784.0

Congenital posterior urethral valves 171.3

92.4

10.5

13.0

00.0

281.4


82.1

136.2

26.0

00.0

1115.6

Deletion 22q11.2 90.7

10.3

21.0

00.0

19.7

140.7


102.6

41.9

00.0

00.0

673.4

Double outlet right ventricle 312.3

133.4

31.4

13.0

00.0

482.4


00.0

52.4

13.0

00.0

191.0

Encephalocele 131.0

123.2

31.4

00.0

00.0

281.4


433.2

92.4

31.4

13.0

00.0

562.8

Gastroschisis 987.4

195.0

115.3

411.9

00.0

1326.7

Holoprosencephaly 221.7

82.1

41.9

26.0

00.0

361.8


133.4

21.0

26.0

00.0

723.6

Hypospadias* 63993.6

14474.4

2725.5

1588.1

356.2

82881.9

Interrupted aortic arch 90.7

20.5

00.0

13.0

00.0

130.7



ArkansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







256.6

115.3

411.9

00.0

1296.5

Omphalocele 332.5

133.4

52.4

00.0

00.0

512.6


6015.8

2913.9

1132.8

219.3

30115.2


41.1

31.4

13.0

00.0

160.8

Rectal and large intestinal atresia/stenosis 564.2

133.4

62.9

26.0

00.0

773.9

Renal agenesis/hypoplasia 312.3

102.6

94.3

00.0

00.0

502.5


41.1

21.0

00.0

00.0

130.7

Small intestinal atresia/stenosis 413.1

123.2

94.3

13.0

19.7

643.2


92.4

125.7

26.0

00.0

904.6


164.2

62.9

26.0

19.7

864.4


120.9

41.1

21.0

26.0

219.3

221.1


92.4

62.9

38.9

00.0

834.2


584.4

82.1

52.4

38.9

00.0

743.7


30.8

41.9

13.0

00.0

160.8

Trisomy 13 110.8

51.3

41.9

00.0

00.0

201.0

Trisomy 18 453.4

123.2

73.4

00.0

00.0

643.2


297.6

3215.3

38.9

00.0

23211.8

Turner syndrome 181.4

20.5

31.4

00.0

00.0

231.2

Ventricular septal defect 87165.6

16743.9

17483.3

36107.4

219.3

125163.4


38012.

20888.

3352.

1036.

197395.

Male live births 68276.

19362.

10602.

1702.

534.

101146.




ArkansasTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)ArkansasTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.021.4

201.0

Trisomy 18 321.8

3222.5

643.2


9264.8

23211.8


14207.

197395.




CaliforniaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)CaliforniaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 111.3

<5.

602.5

<5.

00.0

972.9


00.0

170.7

<5.

00.0

280.8


<5.

883.7

103.9

00.0

1083.2


<5.

190.8

<5.

<5.

401.2


3018.9

28412.1

3112.0

<5.

46713.7

1


404.6

148.8

873.7

103.9

<5.

1564.6


<5.

110.5

<5.

<5.

230.7

Bladder exstrophy <5.

<5.

<5.

<5.

00.0

60.2

Choanal atresia <5.

00.0

50.2

00.0

00.0

80.2


<5.

522.2

124.7

<5.

942.8


<5.

1385.9

155.8

<5.

2096.2


<5.

853.6

103.9

<5.

1364.0

2

Cloacal exstrophy <5.

00.0

<5.

00.0

00.0

<5.


106.3

863.7

103.9

<5.

1654.9

Common truncus (truncus arteriosus) <5.

00.0

50.2

00.0

00.0

80.2


<5.

170.7

62.3

00.0

341.0


00.0

682.9

<5.

00.0

1053.1


<5.

492.1

72.7

00.0

862.5


<5.

472.0

83.1

<5.

762.2


00.0

110.5

<5.

00.0

210.6

Encephalocele 60.7

<5.

190.8

<5.

<5.

320.9


212.4

00.0

261.1

<5.

<5.

521.5

3

Gastroschisis 465.3

63.8

1094.6

145.4

<5.

1895.6


<5.

261.1

<5.

00.0

381.1


53.2

351.5

72.7

00.0

732.1

Hypospadias* 7416.5

1012.5

777.4

1410.6

<5.

17910.3

4

Interrupted aortic arch <5.

<5.

80.3

00.0

00.0

130.4


53.2

632.7

62.3

<5.

1093.2

Omphalocele 70.8

<5.

261.1

<5.

00.0

441.3


106.3

1235.2

228.5

<5.

2066.1



CaliforniaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







<5.

371.6

<5.

<5.

511.5


<5.

703.0

155.8

<5.

1173.4

5


00.0

140.6

<5.

00.0

210.6

6


<5.

261.1

<5.

00.0

361.1


74.4

903.8

83.1

<5.

1323.9


<5.

823.5

<5.

<5.

1354.0


<5.

652.8

51.9

00.0

1053.1


111.3

<5.

441.9

<5.

<5.

641.9


<5.

331.4

51.9

00.0

521.5


121.4

<5.

331.4

51.9

00.0

521.5


00.0

140.6

<5.

<5.

220.6

Trisomy 13 80.9

<5.

200.8

<5.

00.0

461.4

Trisomy 18 202.3

<5.

552.3

83.1

00.0

1133.3


2113.3

31413.3

3513.6

<5.

48914.4


15846.

235353.

25779.

2117.

339759.


8010.

104163.

13194.

1086.

173117.




CaliforniaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)CaliforniaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.8102.6

461.4

Trisomy 18 441.5

4411.4

1133.3


23460.5

48914.4


38650.

339759.


Notes1.For atrial septal defect (ASD), only cases confirmed by physician review or echo or cath or surgery or autopsy are included; if the ASD is a componentof another major heart malformation, it is not counted.2.Submucous cleft and bifid uvula are not included in this report.3.Isolated tracheoesophageal fistula is not included in this report.4.Hypospadias case counts include only 2nd and 3rd degree.5.Anal stenosis is not included in this report.6.Unilateral renal agenesis/hypoplasia is not included in this report.

General comments-<5 indicates cell size suppressed to protect confidentiality or to indicate case count <5.-California includes stillbirths of all gestational ages.-Cases with chromosomal defects other than trisomy 13, 18 and 21 are not included in this report.-Cases with single gene disorders are not included in this report.



ColoradoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)ColoradoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 251.2

31.9

222.1

21.7

14.1

581.7

1


21.3

262.5

00.0

00.0

611.8


53.2

434.2

21.7

14.1

1002.9


21.3

302.9

10.9

00.0

1143.3


243156.4

1174113.6

149126.8

2394.8

3845112.8


844.1

106.4

363.5

32.6

28.2

1394.1

2


10.6

121.2

00.0

00.0

391.1


00.0

30.3

00.0

14.1

120.4


63.9

242.3

10.9

14.1

772.3


31.9

494.7

32.6

14.1

1544.5


53.2

10810.5

54.3

312.4

2637.7


106.4

989.5

43.4

28.2

3018.8


74.5

716.9

76.0

28.2

2276.7

Clubfoot 38418.8

1811.6

17817.2

119.4

520.6

61618.1


1610.3

959.2

54.3

00.0

3129.2


10.6

111.1

00.0

14.1

280.8


21.3

201.9

10.9

14.1

641.9


106.4

201.9

21.7

00.0

922.7


53.2

171.6

10.9

00.0

541.6


53.2

262.5

21.7

00.0

1073.1


21.3

181.7

21.7

00.0

421.2


00.0

70.7

32.6

00.0

351.0

Encephalocele 140.7

42.6

121.2

10.9

00.0

341.0


874.3

42.6

353.4

32.6

14.1

1333.9

Gastroschisis 653.2

74.5

626.0

10.9

28.2

1444.2

3


00.0

171.6

00.0

14.1

361.1


21.3

282.7

00.0

00.0

892.6


100126.5

37971.3

4678.3

15122.9

2011114.9


42.6

60.6

00.0

00.0

341.0


21.3

393.8

21.7

28.2

1394.1



ColoradoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 412.0

42.6

212.0

10.9

00.0

812.4

3


106.4

737.1

108.5

28.2

2256.6


53.2

272.6

32.6

00.0

702.1


85.1

716.9

86.8

416.5

2015.9


117.1

535.1

43.4

14.1

1865.5


21.3

121.2

00.0

14.1

320.9


53.2

716.9

43.4

312.4

1905.6


31.9

514.9

21.7

28.2

1303.8

1


63.9

383.7

65.1

00.0

1253.7


130.6

00.0

212.0

00.0

00.0

361.1


42.6

343.3

54.3

00.0

1133.3


442.2

42.6

252.4

43.4

00.0

812.4


42.6

70.7

10.9

00.0

300.9

4

Trisomy 13 150.7

21.3

151.5

00.0

00.0

772.3

Trisomy 18 331.6

42.6

333.2

54.3

14.1

1735.1


3019.3

16916.4

1311.1

28.2

71921.1


21.3

222.1

43.4

00.0

661.9


8353.4

54552.7

5143.4

1145.3

161547.4

5


15542.

103340.

11750.

2426.

340832.


7908.

53121.

5876.

1221.

175036.




ColoradoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)ColoradoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.3417.5

772.3

Trisomy 18 732.6

10018.2

1735.1


43078.3

71921.1


54936.

340832.


Notes1.Live births and fetal deaths any gestational age.2.Cannot include Inlet Ventricular Septal Defect (VSD).3.Medical record review.4.Tricuspid stenosis and hypoplasia included.5.Includes probable cases.

General comments-Contact Program for specific details.-Criticial congenital heart reports have been confirmed/invalidated.-Fetal Deaths are any events that are not live birth.-For specific conditions, inclusion criteria has changed from previous years.-Medicaid added as a data source starting with the 2009 data year.-State only reports live births and fetal deaths at any gestational age.



DelawareBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)DelawareBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)






Anencephalus 41.6

10.8

34.4

00.0

00.0

91.9


00.0

11.5

14.8

00.0

61.3


21.6

811.7

00.0

00.0

204.2


10.8

00.0

14.8

00.0

102.1


2519.7

2029.3

14.8

00.0

11424.2

1


197.5

64.7

34.4

00.0

00.0

285.9


21.6

00.0

00.0

00.0

30.6


10.8

11.5

00.0

00.0

51.1


10.8

11.5

14.8

00.0

81.7


32.4

45.9

14.8

00.0

245.1


53.9

45.9

29.6

00.0

296.1

2

Clubfoot 2911.4

1310.3

811.7

29.6

00.0

5211.0


32.4

34.4

00.0

00.0

153.2

3


00.0

00.0

00.0

00.0

10.2


21.6

57.3

14.8

00.0

173.6


43.2

00.0

00.0

00.0

71.5

4


43.2

710.3

00.0

00.0

275.7


10.8

00.0

00.0

00.0

20.4


00.0

22.9

14.8

00.0

91.9


21.6

45.9

00.0

00.0

112.3


10.8

00.0

00.0

00.0

40.8

Encephalocele 31.2

21.6

11.5

00.0

00.0

61.3


41.6

10.8

34.4

00.0

00.0

81.7

Gastroschisis 197.5

75.5

57.3

00.0

00.0

316.6

5


32.4

00.0

00.0

00.0

40.8


75.5

710.3

00.0

1158.7

234.9


5280.8

1337.9

983.3

1344.8

19681.5


75.5

22.9

00.0

00.0

163.4

6

Omphalocele 20.8

43.2

00.0

00.0

00.0

61.3

5


2217.4

68.8

14.8

00.0

6914.6

7



DelawareBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)







32.4

22.9

00.0

00.0

132.8


21.6

22.9

00.0

00.0

224.7


86.3

68.8

14.8

00.0

357.4


00.0

00.0

00.0

00.0

51.1


43.2

22.9

00.0

00.0

132.8


43.2

11.5

00.0

00.0

122.5

8


32.4

34.4

419.1

00.0

234.9

9


41.6

10.8

00.0

00.0

00.0

51.1


32.4

57.3

14.8

00.0

183.8


83.1

32.4

57.3

14.8

00.0

173.6


64.7

00.0

00.0

00.0

102.1


10.8

00.0

00.0

00.0

10.2

Trisomy 13 10.4

00.0

11.5

00.0

00.0

20.4

Trisomy 18 62.4

43.2

22.9

14.8

00.0

132.8


129.5

57.3

419.1

00.0

6012.7


00.0

22.9

00.0

00.0

71.5


8264.7

6493.8

1467.0

1158.7

37579.5

10


12670.

6823.

2091.

63.

47183.


6438.

3430.

1080.

29.

24053.




DelawareTrisomy Counts and Prevalence by Maternal Age 2007 - 2010 (Prevalence per 10,000 Live Births)DelawareTrisomy Counts and Prevalence by Maternal Age 2007 - 2010 (Prevalence per 10,000 Live Births)



0.211.5

20.4

Trisomy 18 71.7

69.2

132.8


2944.5

6012.7


6523.

47183.


Notes1.Atrial septal fenestrations are reported as an atrial septal defect (ASD). ASDs that self-close (not present after a month) are considered Patent ForamenOvales (PFO). PFOs are not counted.2.Pierre Robin anomalies with cleft palate are included as a cleft palate.3.Interrupted aortic arch is not reported as a separate defect but is included in coarctation of aorta.4.Only cases involving surgical intervention are reported.5.Distinction between gastroschisis and omphalocele is confirmed by review of clinical or surgical documentation.6.Complex hand anomalies, adactyly, and syndactyly are reported as Reduction Defects.7.Peripheral, branch, trivial, or limited are not included.8.Spina bifida occulta is not included.9.A ventricular septal defect with an overriding aorta is counted as Tetralogy of Fallot.10.All sizes and types of ventricular septal defects are included and all resolved VSDs are included. Probable cases are only included if the defect wasfound prenatally and the fetus died without a confirmatory autopsy.

General comments-2007 Maternal Fetal Medicine (MFM) cases were derived from cytogenetic lists and fetal therapy lists. 2008 Maternal Fetal Medicine cases werederived from all possible defect cases handled by MFM. 2009 Maternal and Fetal Medicine cases were derived from cytogenetic lists only.-All chromosomal defects require a cytogenetics report.-All defects found prenatally must be confirmed postnatally or through cytogenetic testing.-All heart defects require an echocardiogram report.-Coding System used was CDC/BPA.-Delaware did not perform CCHD screening in 2007, 2008, 2009, and 2010.-Fetal deaths (including terminations) are included if the fetus weighed 350 grams or higher; in the absence of weight at least 20 weeks gestation orgreater.-Registry data from 2011 is currently being vetted.-Registry does not distinguish spontaneous terminations from elective terminations. Stillbirths, miscarriages, and terminations are all currently reportedtogether.



FloridaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)FloridaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 310.6

210.9

140.4

00.0

00.0

690.6


210.9

250.8

00.0

00.0

920.8


70.3

391.2

41.3

15.0

900.8


190.8

331.0

41.3

15.0

1471.3


2154.4

1144.7

1033.3

165.0

00.0

4594.1


341.4

230.7

41.3

15.0

1061.0


100.4

60.2

00.0

00.0

280.3


291.2

451.4

51.6

15.0

1731.6


411.7

501.6

72.2

00.0

2542.3


823.4

1464.6

206.3

15.0

5494.9


1164.7

1534.8

185.6

00.0

6085.5


1717.0

1936.1

175.3

315.1

7076.4

Clubfoot 74715.1

25810.6

36111.4

3410.7

210.1

142912.9


1405.7

1815.7

154.7

210.1

7576.8


150.6

180.6

20.6

00.0

840.8


341.4

300.9

20.6

00.0

1461.3


612.5

240.8

51.6

00.0

1621.5


50.2

30.1

00.0

00.0

230.2


823.4

762.4

103.1

00.0

3483.1


692.8

792.5

82.5

00.0

2702.4


120.5

150.5

30.9

15.0

730.7

Encephalocele 360.7

331.3

260.8

10.3

00.0

970.9


1222.5

562.3

581.8

41.3

00.0

2452.2

Gastroschisis 2966.0

692.8

1193.8

61.9

00.0

4974.5

1


1285.2

1233.9

154.7

15.0

4764.3


843.4

762.4

72.2

00.0

3413.1


83567.0

80950.0

8149.0

329.1

399670.2


160.7

250.8

20.6

00.0

770.7


984.0

1003.2

123.8

00.0

3973.6

Omphalocele 452.4

272.8

191.6

21.6

00.0

952.2

2



FloridaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







30912.6

2969.4

226.9

315.1

10869.8


471.9

451.4

51.6

00.0

1711.5


1194.9

1163.7

123.8

15.0

4594.1


1174.8

1324.2

113.4

15.0

5264.7


471.9

371.2

51.6

00.0

1481.3


1496.1

1374.3

165.0

00.0

5775.2


602.5

872.8

82.5

00.0

3212.9


1225.0

1143.6

185.6

210.1

5274.7


430.9

351.4

341.1

51.6

00.0

1181.1


471.9

772.4

10.3

00.0

3002.7


1422.9

361.5

642.0

00.0

00.0

2502.2


321.3

290.9

20.6

00.0

1201.1

Trisomy 13 420.9

301.2

240.8

00.0

00.0

980.9

Trisomy 18 841.7

592.4

642.0

72.2

00.0

2202.0


31212.8

42613.5

4413.8

315.1

147813.3


180.7

280.9

00.0

00.0

780.7


131253.7

204064.5

15949.8

525.2

653258.7


244455.

316075.

31917.

1982.

1111955.


124539.

161861.

16539.

1030.

569537.




FloridaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)FloridaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.7332.0

980.9

Trisomy 18 1221.3

986.0

2202.0


71943.8

147813.3


164189.

1111955.


Notes1.Cases of Gastroschisis were differentiated from Omphalocele by using 54.71 procedure code in 2007-2009 and the 756.73 ICD-9-CM code in2010-2011.2.Reported for 2010-2011 only using the ICD-9-CM code 756.72.

General comments-Atrial septal defect, Tricuspid valve atresia, and Craniosynostosis are not reported.-Atrioventricular septal defect, Ventricular septal defect, and Tricuspid valve atresia and stenosis include probable cases.



Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 141.9

323.2

213.5

10.6

00.0

773.0


121.2

91.5

21.2

00.0

341.3


141.4

213.5

10.6

00.0

471.8


90.9

71.2

10.6

00.0

351.3


14814.7

7011.7

116.8

00.0

37814.5


446.1

898.8

274.5

21.2

147.4

1827.0


131.3

20.3

00.0

147.4

240.9


10.1

00.0

00.0

00.0

50.2


111.1

30.5

10.6

00.0

251.0


323.2

172.8

84.9

00.0

853.3


515.1

437.2

95.6

00.0

1545.9


484.8

345.7

63.7

00.0

1315.0


00.0

00.0

00.0

00.0

10.0

Clubfoot 11816.3

15014.9

7913.2

116.8

147.4

39015.0


464.6

244.0

42.5

00.0

1395.3


121.2

40.7

21.2

00.0

291.1


181.8

91.5

31.9

00.0

451.7


393.9

172.8

10.6

00.0

993.8


333.3

193.2

31.9

147.4

1234.7


121.2

20.3

00.0

00.0

281.1


222.2

203.3

10.6

3142.2

773.0


292.9

101.7

10.6

00.0

572.2


30.3

61.0

21.2

00.0

150.6

Encephalocele 20.3

161.6

61.0

63.7

147.4

371.4


233.2

242.4

81.3

00.0

00.0

602.3

Gastroschisis 304.1

484.8

284.7

53.1

00.0

1194.6


252.5

122.0

53.1

00.0

622.4


191.9

81.3

84.9

00.0

592.3


36270.4

7323.9

2732.5

2180.2

83762.7


60.6

00.0

00.0

00.0

120.5



Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







595.8

244.0

21.2

00.0

1244.8

Omphalocele 212.9

383.8

142.3

31.9

147.4

903.5


706.9

376.2

74.3

147.4

1786.8


202.0

152.5

00.0

00.0

562.1


404.0

335.5

84.9

00.0

1184.5


636.2

213.5

84.9

147.4

1686.4


121.2

111.8

21.2

00.0

341.3


454.5

203.3

74.3

00.0

1074.1


373.7

294.8

42.5

00.0

1114.3


525.2

101.7

63.7

00.0

1244.8


50.7

80.8

91.5

31.9

00.0

271.0


262.6

162.7

10.6

00.0

773.0


263.6

191.9

81.3

10.6

00.0

582.2


171.7

71.2

21.2

00.0

451.7


80.8

20.3

10.6

00.0

180.7

Trisomy 13 121.7

262.6

50.8

10.6

00.0

501.9

Trisomy 18 506.9

414.1

142.3

116.8

147.4

1425.4


16616.5

12120.2

2817.3

294.8

55921.4


252.5

61.0

53.1

00.0

642.5


43643.2

32253.8

4628.4

6284.4

139653.5


100899.

59807.

16187.

211.

260850.


51428.

30560.

8312.

111.

133459.




Georgia (Metropolitan Atlanta Congenital Defects Program)Trisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)Georgia (Metropolitan Atlanta Congenital Defects Program)Trisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.3224.3

501.9

Trisomy 18 412.0

9919.2

1425.4


28054.4

55921.4


51486.

260850.


General comments-Elective terminations include all gestational ages.-Georgia uses CDC/BPA codes to determine defects.-Live births include gestational ages greater than or equal to 20 weeks.-Stillbirths include gestational ages greater than or equal to 20 weeks.-Unknown category includes cases of any gestational age with a prenatal diagnosis for which the outcome could not be documented in data sources and nobirth or fetal death certificate was found. Most are probably elective terminations, but don<t have the actual record to confirm. Cases for which the date ofdelivery was unknown are included in the year of their last known prenatal test.



IllinoisBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)IllinoisBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 270.6

292.0

371.8

51.1

00.0

981.2


141.0

261.3

81.7

00.0

921.1


70.5

633.1

122.5

00.0

1291.5


80.5

211.0

40.8

00.0

971.1


40727.9

45322.6

8217.3

221.3

200723.7


2074.6

805.5

753.7

122.5

00.0

3744.4

1


10.1

30.1

10.2

00.0

80.1


40.3

40.2

00.0

00.0

230.3


141.0

170.8

40.8

00.0

790.9


382.6

432.1

132.7

221.3

2513.0


594.0

1527.6

306.3

00.0

4445.2


443.0

924.6

214.4

00.0

3844.5


20.1

10.0

00.0

00.0

70.1

Clubfoot 1533.4

432.9

633.1

61.3

00.0

2713.2


292.0

693.4

91.9

00.0

2513.0


70.5

120.6

10.2

00.0

420.5


221.5

100.5

20.4

00.0

640.8


171.2

80.4

20.4

00.0

530.6


40.3

60.3

10.2

00.0

290.3


443.0

442.2

112.3

110.6

2142.5


201.4

331.6

112.3

00.0

1171.4


20.1

120.6

10.2

00.0

400.5

Encephalocele 200.4

130.9

261.3

30.6

00.0

620.7


982.2

211.4

391.9

91.9

00.0

1682.0


533.6

1095.4

40.8

00.0

3143.7


40.3

271.3

00.0

00.0

500.6


261.8

402.0

61.3

00.0

1531.8


36248.8

27126.7

9739.8

120.2

217150.1


40.3

20.1

10.2

00.0

190.2


644.4

613.0

132.7

00.0

3153.7



IllinoisBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 811.8

332.3

492.4

30.6

00.0

1662.0


463.2

512.5

81.7

00.0

2202.6


100.7

130.6

20.4

00.0

460.5


584.0

743.7

194.0

00.0

2913.4


674.6

984.9

204.2

00.0

3964.7


50.3

50.2

10.2

00.0

310.4


191.3

442.2

91.9

00.0

1341.6


241.6

653.2

132.7

00.0

2272.7


503.4

592.9

173.6

00.0

2623.1


260.6

110.8

281.4

30.6

00.0

680.8


241.6

452.2

102.1

00.0

1932.3


952.1

221.5

351.7

102.1

00.0

1621.9


292.0

371.8

61.3

110.6

1461.7

2


241.6

271.3

61.3

110.6

1241.5

3

Trisomy 13 701.6

211.4

311.5

40.8

00.0

1321.6

Trisomy 18 751.7

292.0

462.3

71.5

00.0

1732.0


1288.8

31415.7

428.9

110.6

107312.7


30.2

201.0

10.2

00.0

500.6


47132.3

81740.8

14630.8

221.3

326938.6

4


146003.

200024.

47388.

941.

847854.


74208.

101678.

24358.

494.

433523.




IllinoisTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)IllinoisTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.0574.3

1321.6

Trisomy 18 630.9

1108.3

1732.0


58243.7

107312.7


133201.

847854.


Notes1.Includes inlet ventricular septal defects (VSD) including common atrioventricular canal type VSD.2.Includes cases with tricuspid stenosis or hypoplasia.3.Does not include cases with tricuspid stenosis or hypoplasia.4.Includes probable cases and excludes inlet ventricular septal defects (VSD) including common atrioventricular canal type VSD.

General comments-2010 and 2011 birth (denominator) data are provisional.-Data for conditions include live births from birth to age 2 years and fetal deaths.-Fetal deaths include stillbirths of 20 weeks gestation or more and miscarriages where the families chose to hold funerals.-NCHS bridged race data were not available. Multiple-race individuals are included in the other/unknown category.-State only reports live births and fetal deaths.



IowaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)IowaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 482.9

44.7

84.9

12.0

00.0

633.2


22.4

53.1

47.9

110.4

442.2


11.2

116.8

00.0

00.0

472.4


11.2

21.2

36.0

110.4

593.0


4047.3

4930.1

917.9

552.2

61030.9


1016.1

78.3

148.6

24.0

00.0

1246.3


11.2

10.6

00.0

00.0

90.5


00.0

00.0

00.0

00.0

30.2


11.2

00.0

12.0

00.0

311.6


44.7

42.5

24.0

110.4

844.3


78.3

127.4

611.9

110.4

1165.9


33.5

84.9

47.9

110.4

1336.7


00.0

10.6

00.0

00.0

40.2

Clubfoot 26516.1

2226.0

2716.6

917.9

220.9

32916.7


33.5

116.8

12.0

110.4

1155.8


00.0

00.0

12.0

00.0

70.4


22.4

53.1

36.0

110.4

542.7


22.4

10.6

24.0

110.4

241.2


44.7

95.5

47.9

00.0

1487.5


22.4

00.0

00.0

00.0

221.1


55.9

63.7

24.0

00.0

552.8


33.5

42.5

00.0

00.0

341.7


00.0

10.6

12.0

00.0

211.1

Encephalocele 171.0

11.2

10.6

00.0

00.0

201.0


472.8

00.0

31.8

12.0

00.0

512.6

Gastroschisis 885.3

910.6

1710.5

36.0

441.8

1216.1


44.7

53.1

00.0

00.0

331.7


33.5

53.1

12.0

00.0

552.8


1943.5

2631.7

623.6

00.0

56556.0


11.2

00.0

00.0

00.0

80.4



IowaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







1315.4

148.6

59.9

00.0

1226.2

Omphalocele 422.5

22.4

31.8

12.0

00.0

492.5


1214.2

169.8

917.9

110.4

24912.6


11.2

21.2

00.0

00.0

241.2


44.7

138.0

24.0

00.0

964.9


33.5

95.5

59.9

00.0

1216.1


33.5

00.0

00.0

00.0

140.7


22.4

127.4

12.0

00.0

693.5


67.1

148.6

12.0

110.4

844.3


44.7

53.1

12.0

110.4

753.8


161.0

00.0

31.8

00.0

00.0

191.0


22.4

74.3

36.0

00.0

713.6

1


523.2

11.2

63.7

36.0

00.0

623.1


22.4

63.7

00.0

110.4

572.9


00.0

31.8

00.0

00.0

130.7

Trisomy 13 251.5

00.0

42.5

12.0

00.0

331.7

Trisomy 18 523.2

67.1

63.7

36.0

00.0

673.4


1214.2

3722.8

713.9

00.0

26313.3


55.9

42.5

12.0

00.0

502.5


4047.3

9357.2

2345.7

883.6

111056.2

2


8454.

16253.

5033.

957.

197436.


4365.

8199.

2539.

480.

100860.




IowaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)IowaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.3104.8

331.7

Trisomy 18 432.4

2411.4

673.4


12358.5

26313.3


21010.

197436.


Notes1.Excluded codes 745.185, 745.186, 745.188, 745.189, as they are used for DORV (per IRCID code manual).2.Probable cases are excluded as well as code 745.487.

General comments-Iowa includes all gestational ages for terminations.-Iowa uses CDC/BPA codes that are provided for the NBPDS study.-Iowa uses modified coding for choanal atresia, cloacal exstrophy, craniosynostosis, deletion 22 q11, diaphragmatic hernia, double outlet right ventricle,and limb deficiencies (reduction defects). Please contact Iowa Registry for Congenital Inherited Diseases (IRCID) for further information.-Stillbirths are defined as greater than or equal to 20 weeks gestation and/or greater than or equal to 350 gram birthweight.-The unspecified non-livebirth category includes spontaneous abortions.



KansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)KansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 332.3

<5.

164.9

<5.

<5.

532.7

Anotia/microtia <5.

00.0

61.8

00.0

00.0

70.4

Aortic valve stenosis <5.

00.0

<5.

00.0

00.0

<5.


2215.9

7021.5

<5.

<5.

44522.4


120.9

<5.

<5.

00.0

00.0

180.9


00.0

<5.

00.0

00.0

120.6


00.0

<5.

00.0

00.0

221.1


<5.

82.5

00.0

00.0

492.5


<5.

257.7

<5.

<5.

904.5


<5.

<5.

<5.

00.0

211.1

Clubfoot 966.8

96.5

226.8

<5.

00.0

1527.7


00.0

<5.

00.0

00.0

211.1

Common truncus (truncus arteriosus) <5.

00.0

00.0

00.0

00.0

<5.

Congenital cataract <5.

00.0

<5.

00.0

00.0

<5.


00.0

<5.

00.0

00.0

70.4


<5.

82.5

<5.

00.0

281.4

Double outlet right ventricle <5.

<5.

<5.

00.0

00.0

80.4

Encephalocele 60.4

00.0

<5.

00.0

00.0

80.4


90.6

00.0

<5.

00.0

00.0

170.9

Gastroschisis 644.5

<5.

113.4

00.0

00.0

884.4


<5.

92.8

<5.

00.0

462.3


00.0

51.5

<5.

00.0

231.2


1420.0

2012.0

<5.

<5.

22922.6


<5.

<5.

00.0

00.0

<5.


<5.

144.3

<5.

00.0

783.9

Omphalocele 282.0

<5.

51.5

<5.

00.0

422.1


<5.

51.5

00.0

00.0

381.9


<5.

123.7

<5.

00.0

371.9


<5.

61.8

00.0

00.0

281.4


00.0

<5.

<5.

00.0

281.4



KansasBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







<5.

134.0

<5.

00.0

613.1


00.0

<5.

00.0

00.0

170.9


<5.

00.0

00.0

00.0

00.0

<5.


<5.

<5.

<5.

00.0

211.1

Tricuspid valve atresia and stenosis <5.

<5.

<5.

00.0

00.0

50.3

Trisomy 13 <5.

<5.

<5.

<5.

00.0

120.6

Trisomy 18 171.2

<5.

72.2

00.0

00.0

261.3


53.6

4614.1

814.1

<5.

21911.0


<5.

<5.

00.0

00.0

130.7


96.5

6118.7

<5.

<5.

27013.6


13800.

32549.

5678.

1119.

198340.


6989.

16602.

2957.

548.

101454.




KansasTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)KansasTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.4<5.

120.6

Trisomy 18 150.8

115.3

261.3


8942.9

21911.0


20729.

198340.


General comments-Abortions (induced terminations of pregnancy) are defined as the purposeful interruption of pregnancy with the intention other than to produce alive-born infant or to remove a dead fetus and which does not result in a live birth. Kansas collects information on birth defects only for live births andfetal deaths/stillbirths.-Kansas does not formally provide Critical Congenital Heart Defect (CCHD) screening. No data is available for Dextro-transposition of great arteries(d-TGA), Pulmonary valve atresia, or Tricuspid valve atresia.-Passive case-finding (without case confirmation); all are probable cases; include In-state resident births only.-Stillbirth means any complete expulsion or extraction from its mother of a human child the gestational age of which is not less than 20 completed weeks,resulting in other than a live birth, as defined in this section, and which is not an induced termination of pregnancy.-Unspecified non live births definition: not applicable



KentuckyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)KentuckyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 301.3

31.2

21.4

00.0

00.0

421.5


00.0

00.0

00.0

00.0

110.4


10.4

00.0

00.0

00.0

80.3


31.2

10.7

00.0

00.0

240.9


741291.7

191132.8

48163.4

392.3

5220187.0


281.2

31.2

00.0

00.0

00.0

351.3


00.0

10.7

00.0

00.0

90.3


00.0

00.0

00.0

00.0

50.2


00.0

00.0

13.4

00.0

170.6


93.5

21.4

13.4

00.0

541.9


124.7

53.5

00.0

130.8

1575.6


93.5

10.7

310.2

00.0

1234.4


114.3

10.7

26.8

00.0

722.6

Clubfoot 2229.6

3513.8

139.0

310.2

00.0

28910.4


52.0

21.4

00.0

00.0

933.3


00.0

00.0

00.0

00.0

40.1


31.2

10.7

00.0

00.0

160.6


00.0

00.0

00.0

00.0

200.7


00.0

00.0

00.0

00.0

60.2


52.0

21.4

13.4

00.0

501.8


31.2

00.0

00.0

00.0

230.8


00.0

00.0

00.0

00.0

80.3

Encephalocele 110.5

31.2

00.0

00.0

00.0

180.6


231.0

20.8

32.1

00.0

00.0

351.3

Gastroschisis 182.0

11.1

35.4

00.0

00.0

383.5

1


62.4

21.4

310.2

00.0

602.1


31.2

10.7

00.0

00.0

461.6


10178.4

2838.5

426.8

163.3

111277.8


10.4

00.0

00.0

00.0

20.1


83.1

21.4

13.4

130.8

812.9



KentuckyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 50.6

00.0

00.0

00.0

00.0

121.1

1


145.5

64.2

00.0

00.0

1234.4


10.4

00.0

00.0

00.0

130.5


72.8

53.5

26.8

00.0

853.0


83.1

21.4

517.0

00.0

1073.8


10.4

00.0

00.0

00.0

80.3


72.8

42.8

00.0

00.0

552.0


93.5

64.2

00.0

00.0

1053.8


103.9

10.7

00.0

00.0

632.3


40.2

10.4

00.0

00.0

00.0

60.2


10.4

00.0

00.0

00.0

301.1


140.6

10.4

00.0

00.0

00.0

190.7


10.4

10.7

00.0

00.0

190.7


10.4

10.7

00.0

00.0

190.7

Trisomy 13 70.3

10.4

00.0

00.0

00.0

90.3

Trisomy 18 110.5

31.2

21.4

00.0

00.0

220.8


2710.6

1711.8

00.0

130.8

2488.9


31.2

00.0

00.0

00.0

170.6


6124.0

4027.8

723.8

130.8

70025.1


25399.

14379.

2937.

325.

279188.


12885.

7282.

1494.

158.

142968.




KentuckyTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)KentuckyTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.310.4

90.3

Trisomy 18 130.5

51.9

240.9


9235.7

2488.9


25770.

279188.


Notes1.Cannot distinguish between Gastroschisis and Omphalocele prior to 2009, therefore cases are only reported for the years 2010-2011.

General comments-For total livebirths and total male live births if ethnicity was unknown then race was considered unknown



LouisianaBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)LouisianaBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)






Anencephalus 81.0

50.9

00.0

00.0

00.0

130.9


<5.

00.0

00.0

00.0

120.8


00.0

<5.

00.0

00.0

80.6


101.8

00.0

<5.

00.0

221.5


34160.2

3345.6

1559.9

<5.

82357.3


415.4

183.2

<5.

<5.

00.0

664.6


71.2

<5.

<5.

00.0

201.4


<5.

00.0

00.0

<5.

70.5


<5.

<5.

00.0

00.0

191.5


101.8

<5.

<5.

00.0

402.8


213.7

811.1

<5.

<5.

755.2


356.2

<5.

<5.

00.0

815.6

Clubfoot <5.

<5.

00.0

00.0

00.0

<5.


213.7

<5.

<5.

00.0

553.8


<5.

00.0

<5.

00.0

151.1


81.4

<5.

00.0

00.0

181.3


132.3

<5.

00.0

00.0

342.4

Deletion 22q11.2 <5.

<5.

00.0

<5.

00.0

50.4


101.8

56.9

00.0

00.0

342.4


<5.

<5.

00.0

00.0

120.9

Encephalocele 50.7

81.5

<5.

00.0

00.0

141.1


162.1

101.8

<5.

<5.

00.0

292.0

Gastroschisis 364.7

173.0

00.0

00.0

00.0

533.7

Holoprosencephaly <5.

<5.

<5.

00.0

00.0

<5.


101.9

<5.

00.0

<5.

221.7


17560.6

1540.9

<5.

<5.

54974.9

Interrupted aortic arch <5.

<5.

00.0

00.0

00.0

<5.


254.4

<5.

00.0

00.0

463.2

Omphalocele 121.7

132.5

<5.

00.0

<5.

282.1


457.9

<5.

<5.

<5.

986.8



LouisianaBirth Defects Counts and Prevalence 2007 - 2010 (Prevalence per 10,000 Live Births)







61.1

00.0

00.0

00.0

130.9


213.7

<5.

<5.

<5.

644.5


264.6

<5.

00.0

<5.

674.7

Small intestinal atresia/stenosis <5.

<5.

00.0

00.0

00.0

<5.


111.9

<5.

00.0

00.0

362.5


315.5

<5.

00.0

00.0

594.1


111.9

<5.

<5.

<5.

412.9


222.9

81.4

<5.

<5.

<5.

342.4

Tricuspid valve atresia and stenosis <5.

<5.

<5.

<5.

<5.

80.6

Tricuspid valve atresia <5.

<5.

<5.

<5.

<5.

60.4

Trisomy 13 60.8

<5.

<5.

00.0

00.0

100.7

Trisomy 18 141.8

91.6

<5.

<5.

00.0

281.9


457.9

1013.8

831.9

<5.

16811.7


<5.

00.0

00.0

00.0

80.9


24443.1

3041.5

1143.9

573.1

72150.2


56622.

7234.

2505.

684.

143645.


28867.

3665.

1307.

327.

73343.




LouisianaTrisomy Counts and Prevalence by Maternal Age 2007 - 2010 (Prevalence per 10,000 Live Births)LouisianaTrisomy Counts and Prevalence by Maternal Age 2007 - 2010 (Prevalence per 10,000 Live Births)



0.7<5.

100.7

Trisomy 18 191.5

96.8

281.9


7355.4

16811.7


13187.

143645.


General comments-2007 birth defects data include only live births to Louisiana residents at birth that occurred in 6 of 9 regions: Greater New Orleans, Baton Rouge,Lafayette, Lake Charles, Mandeville, and Shreveport.-2008 birth defects data are provisional and include only live births to Louisiana residents that occurred in 6 of 9 regions: Greater New Orleans, BatonRouge, Lafayette, Lake Charles, Mandeville, and.-2009 birth defects data are provisional and include only live births to Louisiana residents that occurred in 4 of 9 regions Baton Rouge, Lake Charles,Mandeville, and Shreveport.-2010 birth defects data are provisional and include only live births to Louisiana residents that occurred in 2 of 9 regions: Mandeville and Shreveport.-All probable cases are included.-CDC/BPA codes are used to define the birth defects.-Louisiana is an active surveillance state that began identifying births in 2005. Birth defects surveillance has not been conducted among terminations andstill births yet.-The 2011 cohort will not be complete until 12/31/2014 because the LA case definition includes children up to their third birthday.



MaineBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MaineBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 50.8

15.5

00.0

00.0

00.0

101.5

1


00.0

00.0

00.0

00.0

10.4

2


00.0

00.0

00.0

00.0

192.9


15.5

00.0

19.3

117.2

264.0


00.0

00.0

00.0

234.3

426.4


00.0

00.0

00.0

00.0

314.8


00.0

00.0

00.0

00.0

71.1

3

Encephalocele 20.3

00.0

19.9

00.0

00.0

30.5

Gastroschisis 437.1

00.0

00.0

218.6

00.0

456.9

4


15.5

19.9

00.0

00.0

223.4


674.5

371.9

245.4

284.7

15960.3

5


17.0

00.0

00.0

00.0

81.5

6


00.0

00.0

00.0

121.8

122.3

5

Omphalocele 132.1

00.0

00.0

00.0

00.0

132.0

7


00.0

00.0

00.0

00.0

91.4

8


00.0

00.0

00.0

00.0

40.6


00.0

00.0

00.0

00.0

10.2

6


15.5

00.0

00.0

00.0

294.4

9


00.0

00.0

00.0

00.0

223.4

10


00.0

00.0

00.0

00.0

345.2


244.0

00.0

00.0

00.0

00.0

253.8


00.0

00.0

00.0

00.0

60.9


15.5

329.6

00.0

00.0

8913.7

9


1824.

1013.

1075.

583.

65191.

Male live births (2008-2011) 24371.

805.

417.

441.

236.

26364.




MaineTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MaineTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)


Defect Less than 35 35+ Total NotesTrisomy 21 (Down syndrome) 55

9.83438.4

8913.7

9


8851.

65191.


Notes1.Includes probable cases. Includes live births and fetal deaths 20 weeks and over.2.Surveillance for this condition began with 2010 births.3.Truncus arteriosus.4.Gastroschisis coded 756.73.Cases also abstracted to determine diagnosis.5.Surveillance for this condition began with 2008 births.6.Surveillance for this condition ended with 2010 births.7.Omphalocele coded 756.72.Cases also abstracted to determine diagnosis.8.Atresia since 2003,surveillance for Stenosis began with 2010 births.9.Includes live births and fetal deaths 20 weeks and over.10.Includes pulmonary atresia with septal defect.

General comments-Casefinding is limited to babies born in Maine to Maine residents.-Casefinding is limited to birth defects identified within the first year of life.-Data not collected for unspecified non live births.-Fetal deaths are defined as those that occur at any gestational age.-Termination data not available.



MarylandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MarylandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 452.6

161.3

81.6

10.4

00.0

752.0


60.5

10.2

00.0

00.0

90.2


40.3

91.8

20.7

00.0

210.6


00.0

00.0

00.0

00.0

30.1


201.6

61.2

00.0

00.0

491.3


150.9

151.2

30.6

00.0

00.0

330.9


10.1

00.0

00.0

00.0

10.0


20.2

10.2

00.0

00.0

110.3


40.3

20.4

00.0

00.0

100.3


221.7

102.0

83.0

00.0

972.6


322.5

387.4

83.0

00.0

1654.4


211.7

102.0

51.9

00.0

1183.1


10.1

00.0

00.0

00.0

40.1

Clubfoot 1508.7

806.3

285.5

72.6

112.2

2757.3


50.4

00.0

10.4

00.0

160.4


10.1

00.0

00.0

00.0

20.1


00.0

00.0

00.0

00.0

20.1


20.2

00.0

10.4

00.0

90.2


40.3

40.8

10.4

00.0

250.7


110.9

40.8

10.4

00.0

411.1


80.6

10.2

20.7

00.0

170.5


00.0

00.0

00.0

00.0

50.1

Encephalocele 70.4

70.6

10.2

10.4

00.0

170.5


251.4

161.3

61.2

20.7

00.0

511.4

Gastroschisis 40.2

20.2

10.2

00.0

00.0

70.2

1


181.4

91.8

31.1

00.0

571.5


60.5

00.0

20.7

00.0

200.5


25540.0

5219.9

3122.4

0.

75039.0

2


00.0

00.0

00.0

00.0

10.0


362.9

173.3

31.1

00.0

882.3



MarylandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 10.1

00.0

00.0

00.0

00.0

10.1

3


30.2

00.0

00.0

00.0

70.2


10.1

00.0

00.0

00.0

30.1


191.5

71.4

41.5

00.0

571.5


322.5

30.6

31.1

00.0

862.3


20.2

10.2

00.0

00.0

30.1


70.6

10.2

20.7

00.0

320.8


211.7

91.8

41.5

00.0

902.4


110.9

20.4

41.5

00.0

340.9


00.0

00.0

00.0

00.0

00.0

10.0


90.7

30.6

41.5

00.0

290.8


120.7

90.7

30.6

41.5

00.0

290.8


20.2

00.0

10.4

00.0

60.2


10.1

00.0

10.4

00.0

50.1

Trisomy 13 191.1

100.8

20.4

10.4

00.0

320.8

Trisomy 18 382.2

141.1

132.5

51.9

00.0

772.0


1068.4

458.8

238.6

112.2

3619.6


50.4

20.4

20.7

00.0

200.5


282.2

51.0

62.2

00.0

762.0

4


125995.

51215.

26714.

822.

377355.


63771.

26195.

13863.

.

.192209.




MarylandTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MarylandTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.5172.5

320.8

Trisomy 18 361.2

405.8

772.0


19227.9

3619.6


68911.

377159.


Notes1.The data reported is for ICD 9 code 756.79 (Abdominal Wall Defect). We also added a separate line for 756.7,756.70,756.71 (Anomalies ofAbdominal Wall).2.Male births for American Indian or Alaska Native are not available separately.3.Omphalocele case reporting was combined with gastroschisis through 2010. In 2011, Maryland began differentiating gastroschisis and omphalocelewith separate codes.4.Ventricular septal defect case reporting includes probable cases.

General comments-All data is based on hospital reporting through a passive collection system. Data obtained from Vital Statistics does not provide specific diagnosis forvalidation.-Any change in numbers from previous reports is due to correction of counts or late data entry.-Critical Congenital Heart Defect data is based on hospital reporting and can not be validated through Vital Statistics as there is no requirement to specifythe cardiac defect on the birth certificate.-Fetal deaths are those with gestational age less than 20 weeks.-Infants may be counted more than once, as our database up until May 2013 counts diagnoses, not individuals.-Maryland Vital Statistics do not have a separate race category for Other/Unknown and because Hispanic category Includes all births to mothers ofHispanic origin of any race, this leads to totals not adding up to the total number of births.-Terminations are those with gestational age greater than or equal to 20 weeks.-The total number of births data was received from Vital Statistics. Hispanic category Includes all births to mothers of Hispanic origin of any race.



icw6

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cwm7

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MassachusettsBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MassachusettsBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 160.6

41.2

91.6

10.3

00.0

340.9


51.5

142.5

31.0

00.0

491.3


20.6

152.7

113.7

00.0

711.9


72.1

61.1

00.0

00.0

541.4


9026.6

11320.1

5920.0

111.2

77120.5


1275.1

278.0

315.5

103.4

00.0

2015.3


30.9

61.1

41.4

00.0

270.7


00.0

10.2

00.0

00.0

50.1


10.3

40.7

00.0

00.0

290.8


103.0

142.5

144.7

00.0

1253.3


103.0

366.4

124.1

00.0

1945.2


103.0

315.5

134.4

00.0

2095.6

1


10.3

10.2

00.0

00.0

80.2

Clubfoot 31512.7

3410.0

6511.6

186.1

333.5

45112.0


113.2

244.3

31.0

00.0

1554.1


00.0

00.0

10.3

111.2

80.2


103.0

254.5

31.0

00.0

932.5


113.2

101.8

51.7

00.0

471.3


51.5

183.2

41.4

00.0

1794.8


41.2

61.1

51.7

00.0

401.1


82.4

132.3

62.0

111.2

1072.8


51.5

50.9

41.4

00.0

471.3


10.3

40.7

00.0

00.0

160.4

Encephalocele 90.4

00.0

40.7

00.0

00.0

140.4


763.1

72.1

142.5

20.7

00.0

1002.7

Gastroschisis 662.7

164.7

325.7

72.4

00.0

1283.4


20.6

81.4

10.3

00.0

300.8


51.5

112.0

10.3

00.0

601.6


4827.6

4114.3

2516.4

00.0

49525.7

2


20.6

20.4

00.0

00.0

140.4



MassachusettsBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







92.7

335.9

62.0

00.0

1393.7

Omphalocele 401.6

92.7

61.1

20.7

00.0

591.6


4513.3

437.7

155.1

111.2

2897.7


20.6

30.5

00.0

00.0

210.6


92.7

183.2

72.4

00.0

1273.4


41.2

30.5

00.0

00.0

190.5

3


30.9

10.2

20.7

00.0

140.4


92.7

152.7

113.7

111.2

1173.1


82.4

132.3

31.0

00.0

912.4


205.9

325.7

103.4

00.0

1483.9


190.8

10.3

81.4

93.1

00.0

371.0


133.8

142.5

41.4

00.0

1032.7


582.3

113.2

142.5

41.4

00.0

902.4


41.2

40.7

10.3

00.0

270.7


20.6

30.5

10.3

00.0

220.6

Trisomy 13 251.0

41.2

50.9

00.0

00.0

371.0

Trisomy 18 471.9

103.0

183.2

62.0

00.0

962.6


5716.8

9416.8

3612.2

222.3

55814.8


20.6

91.6

00.0

111.2

511.4


7020.7

12722.6

7023.7

00.0

79521.1

4


33855.

56115.

29495.

895.

375905.


17367.

28752.

15225.

453.

192806.




MassachusettsTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MassachusettsTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.6202.4

371.0

Trisomy 18 481.6

485.7

962.6


30636.1

55814.8


84839.

375905.


Notes1.Excludes isolated submucous cleft palate.2.Excludes 1st degree and not otherwise specified (NOS).3.Excludes isolated unilateral renal agenesis/hypoplasia.4.Excludes isolated muscular Ventricular Septal Defects (VSDs).

General comments-2011 data are provisional.-Coding system is CDC/BPA.-Differences in numbers from previous publications are the result of updated files.-Possible/probable cases are excluded.-Pregnancy outcomes reported are live births and unspecified non-live births. From 2007 to 2010 unspecified non-live birth category includes onlystillbirths. In 2011, it includes stillbirths and other pregnancy losses (defined as spontaneous and elective losses).-Source of race/Hispanic ethnicity variable for live births is from the vital records live birth file. Beginning in 2011, live birth certificates allowed thereporting of more than one race, necessitating multiple races to be bridged to one race for purposes of this report. For unspecified non-livebirths thesource of race/Hispanic ethnicity is vital records or medical record abstraction.



MichiganBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MichiganBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 671.6

151.4

92.1

31.4

13.8

981.7


141.3

51.2

31.4

00.0

821.4


141.3

92.1

52.4

00.0

731.2


111.0

92.1

41.9

00.0

1232.1


1250114.8

28565.6

17483.6

30112.7

512386.4


2255.4

524.8

194.4

115.3

00.0

3085.2


161.5

71.6

52.4

00.0

681.1


00.0

00.0

00.0

13.8

100.2


171.6

20.5

52.4

00.0

881.5


181.7

133.0

83.8

00.0

2955.0


363.3

194.4

94.3

13.8

3035.1


353.2

317.1

136.2

311.3

3746.3


635.8

112.5

52.4

13.8

2834.8

Clubfoot 61114.7

12811.8

306.9

3717.8

415.0

81113.7


44741.1

11927.4

5727.4

933.8

166828.1


222.0

20.5

52.4

13.8

831.4


181.7

51.2

41.9

00.0

1192.0


191.7

10.2

21.0

00.0

781.3


60.6

20.5

10.5

00.0

300.5


565.1

286.4

2311.1

311.3

62610.6


292.7

51.2

115.3

27.5

1452.4


80.7

20.5

31.4

00.0

420.7

Encephalocele 320.8

100.9

30.7

00.0

00.0

450.8


1042.5

161.5

61.4

73.4

00.0

1342.3

Gastroschisis 251.6

112.5

10.6

00.0

00.0

371.6


746.8

184.1

73.4

27.5

3255.5


455.2

102.9

31.9

00.0

1874.0


26347.4

6830.5

6257.7

857.8

181159.6


60.6

40.9

31.4

00.0

460.8


484.4

143.2

104.8

311.3

2514.2



MichiganBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 724.5

255.8

42.4

11.5

00.0

1064.6


15113.9

306.9

2512.0

13.8

5799.8


403.7

71.6

73.4

13.8

1402.4


454.1

184.1

94.3

27.5

2634.4


645.9

204.6

146.7

27.5

3095.2


262.4

51.2

31.4

00.0

921.6


514.7

163.7

62.9

00.0

2253.8


262.4

184.1

115.3

00.0

2644.5


726.6

173.9

146.7

13.8

3335.6


200.8

81.2

51.9

43.1

211.9

391.1


565.1

102.3

209.6

415.0

3075.2


1463.5

353.2

61.4

104.8

27.5

2013.4


181.7

61.4

31.4

13.8

851.4


181.7

61.4

31.4

13.8

851.4

Trisomy 13 250.6

131.2

30.7

31.4

00.0

440.7

Trisomy 18 912.2

312.8

81.8

41.9

00.0

1392.3


13412.3

439.9

3416.3

27.5

77413.1


70.6

71.6

31.4

00.0

520.9


42038.6

13330.6

9646.1

1245.1

231339.0

1


108854.

43444.

20814.

2661.

592894.


55534.

22304.

10746.

1384.

303989.




MichiganTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MichiganTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.6111.4

440.7

Trisomy 18 791.5

607.8

1392.3


33042.7

77413.1


77312.

592894.


Notes1.Ventricular septal defect includes probable cases.

General comments-Fetal deaths are included for gestational age greater than 20 weeks or birth weight over 400 grams.



MinnesotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MinnesotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

31.3

32.3

42.5

00.0

141.2


20.9

32.3

10.6

00.0

110.9


20.9

43.0

31.9

16.8

161.3


31.3

10.8

10.6

00.0

141.2


4821.4

2015.2

2616.5

16.8

20016.8


294.6

167.1

75.3

85.1

16.8

685.7


00.0

10.8

10.6

00.0

80.7


00.0

00.0

00.0

00.0

20.2


31.3

32.3

00.0

00.0

151.3


52.2

43.0

95.7

00.0

413.4


104.5

86.1

85.1

427.2

716.0


62.7

86.1

42.5

00.0

665.6


94.0

64.6

63.8

00.0

615.1


10.4

00.0

00.0

00.0

50.4


10.4

00.0

10.6

00.0

141.2


83.6

00.0

10.6

16.8

231.9


31.3

64.6

53.2

00.0

403.4


10.4

53.8

10.6

16.8

181.5


20.9

10.8

10.6

00.0

60.5

Encephalocele 20.3

10.4

00.0

10.6

00.0

40.3


182.9

62.7

21.5

31.9

00.0

312.6

Gastroschisis 223.5

62.7

86.1

95.7

16.8

494.1


31.3

53.8

10.6

00.0

252.1


7162.2

1827.0

1214.7

341.2

33254.6


94.0

21.5

21.3

00.0

282.4

Omphalocele 101.6

31.3

21.5

00.0

00.0

181.5


156.7

139.9

148.9

320.4

937.8


41.8

10.8

42.5

16.8

171.4


83.6

43.0

63.8

00.0

433.6


83.6

75.3

42.5

00.0

484.0



MinnesotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







41.8

32.3

10.6

16.8

201.7


31.3

53.8

21.3

16.8

352.9


62.7

21.5

95.7

00.0

524.4


52.2

43.0

53.2

16.8

352.9


172.7

41.8

43.0

42.5

16.8

332.8


20.9

00.0

10.6

00.0

70.6


20.9

00.0

10.6

00.0

70.6

Trisomy 13 20.3

62.7

53.8

00.0

00.0

141.2

Trisomy 18 101.6

114.9

10.8

42.5

00.0

282.4


4620.5

2519.0

159.5

320.4

19616.5


10145.0

6448.7

3824.1

747.6

46238.9


22450.

13135.

15740.

1471.

118860.


11408.

6666.

8155.

729.

60781.




MinnesotaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MinnesotaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.952.4

141.2

Trisomy 18 131.3

157.1

282.4


10851.3

19616.5


21050.

118860.




MississippiBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)MississippiBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 30.3

60.6

00.0

00.0

00.0

90.4


70.7

00.0

00.0

00.0

110.5


161.7

22.7

14.2

16.7

361.7


101.1

11.4

00.0

00.0

291.4


1153122.0

3446.5

1772.0

41275.5

2336109.2


363.3

505.3

45.5

312.7

00.0

964.5


91.0

11.4

00.0

00.0

150.7


10.1

00.0

00.0

00.0

40.2


00.0

00.0

00.0

16.7

10.0


151.6

22.7

00.0

16.7

452.1


454.8

22.7

416.9

16.7

1155.4


384.0

34.1

416.9

00.0

974.5


111.2

11.4

14.2

00.0

160.7

Clubfoot 50.5

10.1

00.0

00.0

00.0

70.3


283.0

22.7

00.0

00.0

693.2


40.4

00.0

00.0

00.0

80.4


60.6

00.0

00.0

00.0

80.4


212.2

11.4

00.0

00.0

381.8


232.4

22.7

14.2

00.0

502.3


283.0

34.1

28.5

00.0

542.5


50.5

00.0

00.0

00.0

130.6

Encephalocele 50.5

40.4

11.4

00.0

00.0

100.5


302.8

171.8

11.4

00.0

213.4

512.4

Gastroschisis 191.8

181.9

00.0

14.2

00.0

391.8

1


121.3

00.0

00.0

00.0

160.7


313.3

00.0

00.0

00.0

703.3


36376.0

616.3

433.3

227.0

67862.2


10.1

00.0

00.0

00.0

20.1


353.7

11.4

28.5

00.0

783.6


13914.7

34.1

312.7

16.7

27512.9



MississippiBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







373.9

34.1

312.7

16.7

693.2


202.1

11.4

14.2

00.0

432.0


70.7

11.4

00.0

00.0

110.5


141.8

00.0

00.0

00.0

221.3


222.3

11.4

28.5

00.0

602.8


565.9

22.7

28.5

16.7

1336.2


40.4

30.3

11.4

14.2

00.0

90.4


222.3

00.0

312.7

16.7

572.7


222.3

11.4

312.7

00.0

381.8

Trisomy 13 60.6

80.8

00.0

14.2

00.0

150.7

Trisomy 18 151.4

121.3

22.7

00.0

00.0

301.4


848.9

810.9

14.2

320.2

2039.5


00.0

11.4

00.0

00.0

20.1


47950.7

3345.2

729.7

1173.9

109251.0

2


94527.

7307.

2360.

1488.

213977.


47787.

3681.

1200.

741.

109058.




MississippiTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)MississippiTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.710.6

150.7

Trisomy 18 201.0

106.2

301.4


7345.1

2039.5


16172.

213977.


Notes1.Mississippi uses ICD-9 Codes to distinguish between gastroschisis and omphalocele and does not have another method to distinguish the condition.2.Mississippi does not include probable cases.

General comments-Mississippi uses ICD-9 Codes.



NebraskaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)NebraskaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 272.8

11.1

84.0

00.0

00.0

362.7


00.0

00.0

13.1

14.9

151.1


00.0

136.5

13.1

00.0

332.5


00.0

31.5

00.0

00.0

322.4


2225.3

5326.4

1031.1

314.8

35226.6


222.2

11.1

10.5

39.3

00.0

282.1


44.6

10.5

00.0

00.0

120.9


00.0

00.0

00.0

00.0

80.6


22.3

31.5

00.0

00.0

262.0


22.3

73.5

412.5

14.9

513.8


44.6

178.5

39.3

314.8

1057.9


44.6

105.0

00.0

14.9

836.3

Clubfoot 14114.4

1517.2

2613.0

39.3

14.9

19014.3


22.3

157.5

26.2

00.0

886.6


00.0

10.5

00.0

00.0

60.5


00.0

42.0

26.2

00.0

352.6


22.3

31.5

00.0

00.0

282.1


11.1

63.0

00.0

00.0

453.4


11.1

00.0

00.0

00.0

80.6


33.4

63.0

13.1

29.8

352.6


12.9

00.0

17.5

00.0

71.4


00.0

21.0

00.0

00.0

110.8

Encephalocele 60.6

11.1

10.5

13.1

00.0

100.8


161.6

00.0

52.5

00.0

00.0

211.6

Gastroschisis 585.9

33.4

126.0

13.1

419.7

806.0


00.0

21.0

00.0

00.0

100.8


78.0

42.0

00.0

00.0

483.6


3476.1

4644.9

848.9

328.4

56082.6


00.0

10.6

00.0

00.0

80.7


55.7

105.0

26.2

00.0

886.6



NebraskaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 282.9

11.1

31.5

13.1

00.0

342.6


89.2

73.5

26.2

14.9

916.9


11.1

52.5

00.0

14.9

211.6


44.6

105.0

39.3

00.0

735.5


33.4

126.0

13.1

29.8

775.8


33.4

21.0

00.0

00.0

201.5


33.4

63.0

26.2

14.9

413.1


78.0

105.0

26.2

14.9

866.5


00.0

31.5

00.0

14.9

382.9


121.2

00.0

42.0

00.0

00.0

161.2


33.4

94.5

00.0

14.9

584.4


424.3

33.4

94.5

00.0

14.9

574.3


22.3

10.5

00.0

14.9

131.0

Trisomy 13 141.4

11.1

42.0

00.0

00.0

201.5

Trisomy 18 353.6

78.0

84.0

00.0

14.9

523.9


1011.5

4120.5

412.5

29.8

25419.2


22.3

31.5

00.0

00.0

211.6


2933.3

9748.4

824.9

419.7

57643.5


8702.

20047.

3212.

2031.

132496.


4468.

10244.

1636.

1055.

67770.




NebraskaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)NebraskaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.521.3

201.5

Trisomy 18 302.6

2214.5

523.9


8757.4

25419.2


15155.

132496.


General comments-Fetal deaths are a death prior to the complete expulsion or extraction of a product of conception from its mother, irrespective of the duration ofpregnancy. Until the pregnancy has reached 20 weeks duration, it is not required that such a death be reported. It has to be at least 500 grams before it isincluded in the birth defect registry.-Induced terminations are not a source for birth defects for Nebraska.-Nebraska does not use the unspecified non-live birth category.-Probable birth defects were not included.



NevadaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)NevadaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

10.7

50.9

00.0

00.0

80.5


31.7

111.5

00.0

00.0

211.1


00.0

30.4

10.7

00.0

100.5


21.1

81.1

21.3

00.0

241.3


298166.8

776107.8

177117.7

21100.8

2179115.2


182.3

31.7

192.6

21.3

00.0

472.5


21.1

30.4

21.3

00.0

90.5


00.0

20.3

00.0

00.0

50.3


10.6

60.8

00.0

00.0

211.1


105.6

7911.0

42.7

29.6

1316.9


31.7

162.2

21.3

00.0

462.4


73.9

283.9

32.0

00.0

713.8


105.6

9713.5

53.3

14.8

22411.8

Clubfoot 759.4

1910.6

496.8

1610.6

314.4

1698.9


84.5

547.5

106.7

14.8

1266.7


10.6

71.0

10.7

00.0

110.6


21.4

71.2

32.5

00.0

161.1


00.0

00.0

10.8

00.0

20.1


84.5

375.1

32.0

00.0

1176.2


00.0

00.0

00.0

00.0

20.1


73.9

233.2

21.3

00.0

573.0


32.1

122.0

10.8

00.0

281.8


00.0

81.1

00.0

00.0

160.8

Encephalocele 50.6

31.7

30.4

10.7

00.0

130.7


192.4

31.7

131.8

53.3

00.0

422.2


105.6

273.8

85.3

29.6

834.4


42.2

152.1

10.7

00.0

382.0


3335.9

7721.0

1519.2

329.4

31932.9


21.1

71.0

21.3

00.0

201.1


63.4

354.9

85.3

14.8

804.2



NevadaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







3217.9

669.2

85.3

314.4

1839.7


31.7

263.6

64.0

00.0

633.3


105.6

233.2

85.3

14.8

844.4


32.1

71.2

00.0

00.0

151.0


85.6

213.7

32.5

16.3

583.9


95.0

162.2

32.0

00.0

412.2


84.5

314.3

42.7

29.6

884.7


40.5

00.0

40.6

21.3

00.0

110.6


63.4

141.9

00.0

00.0

341.8


42.8

40.7

10.8

15.8

181.2


12.9

10.7

00.0

00.0

20.6

Trisomy 13 81.0

00.0

81.1

00.0

00.0

160.8

Trisomy 18 70.9

21.1

192.6

10.7

00.0

321.7


2413.4

10314.3

138.6

29.6

24312.9


00.0

20.3

00.0

00.0

60.3


7441.4

34247.5

4429.3

838.4

87946.5


17871.

71982.

15034.

2083.

189088.


9202.

36595.

7826.

1021.

96849.




NevadaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)NevadaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.741.5

160.8

Trisomy 18 171.0

103.8

321.7


9034.0

24312.9


26459.

189088.




New HampshireBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)New HampshireBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

00.0

00.0

14.1

00.0

30.4


18.7

00.0

00.0

00.0

40.6


00.0

00.0

14.1

00.0

121.8


18.7

00.0

00.0

00.0

101.5


326.0

00.0

416.4

00.0

8011.9


111.8

18.7

00.0

14.1

00.0

192.8


00.0

00.0

00.0

00.0

20.3


00.0

18.7

00.0

00.0

10.1


00.0

00.0

00.0

00.0

30.4


18.7

00.0

14.1

151.3

385.6


00.0

00.0

00.0

00.0

243.6


00.0

00.0

00.0

00.0

40.6


18.7

00.0

00.0

00.0

91.3


18.7

00.0

416.4

00.0

152.2


00.0

00.0

00.0

00.0

20.3

Encephalocele 20.3

00.0

00.0

00.0

00.0

40.6


122.0

00.0

00.0

00.0

00.0

142.1

Gastroschisis 132.2

00.0

18.7

00.0

00.0

142.1

1


18.7

18.7

00.0

151.3

91.3


582.6

588.2

432.1

00.0

26576.9


00.0

130.7

00.0

00.0

124.3

Omphalocele 91.5

217.3

00.0

00.0

00.0

111.6

1


434.6

18.7

14.1

00.0

456.7


217.3

00.0

00.0

00.0

253.7


217.3

434.8

14.1

00.0

537.9


00.0

18.7

00.0

00.0

142.1


18.7

326.1

14.1

00.0

243.6


20.4

00.0

00.0

00.0

00.0

20.4


217.3

18.7

00.0

00.0

253.7

Trisomy 13 20.3

18.7

00.0

00.0

00.0

30.4



New HampshireBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Trisomy 18 71.2

18.7

00.0

00.0

00.0

131.9


217.3

00.0

28.2

151.3

6710.0


326.0

217.4

312.3

00.0

11316.8

2


1155.

1151.

2436.

195.

67291.


605.

567.

1247.

90.

34479.




New HampshireTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)New HampshireTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.221.8

30.4

Trisomy 18 61.1

76.2

131.9


2522.0

6710.0


11361.

67291.


Notes1.For gastroschisis and omphalocele, cases are distinguished using active medical chart review.2.Probable cases not included.

General comments-Counts of cleft lip without cleft palate and cleft lip with cleft palate cannot be determined from data at present.-Data for all birth conditions includes data ascertained during calendar years 2007 through 2011 for New Hampshire resident mothers.-Data for live births was obtained from the New Hampshire Department of State, Division of Vital Records Administration, Web Query Tool. Data mayvary from year to year due to the process of continuing acquisition of birth certificate information, particularly from New Hampshire residents that givebirth out of state.-Data includes live births from birth to age 2 years, stillbirths and terminations.-Data is for confirmed cases only, following medical chart review and use of the NBDPN (National Birth Defect Prevention Network) Guidelines.-Holoprosencephaly, single ventricle, small intestinal atresia/stenosis, congenital posterior urethral valves, cloacal exstrophy, craniosynostosis, clubfoot,Turner syndrome, and deletion 22 q11 are not collected at present.-In New Hampshire, fetal deaths are defined as those where the fetus was stillborn with a gestational age greater than or equal to 20 weeks.-New Hampshire has no gestational age cut off for terminations.-Started collecting dextro-transposition of the great arteries, pulmonary valve atresia, tricuspid valve atresia, TAPVR (total anomalous pulmonary venousreturn), interrupted aortic arch (IAA), double outlet right ventricle (DORV) in 2013.



New JerseyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)New JerseyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 60.2

10.1

70.5

10.2

00.0

150.3


81.0

201.4

40.7

117.4

531.0


141.7

584.1

112.0

00.0

1272.4


60.7

141.0

20.4

00.0

571.1


41951.5

50035.3

13324.5

7121.5

165030.7

1


712.9

283.4

332.3

91.7

00.0

1482.8


70.9

171.2

40.7

00.0

380.7


10.1

30.2

00.0

00.0

70.1


151.8

271.9

10.2

00.0

791.5


111.4

523.7

193.5

00.0

1763.3


303.7

775.4

315.7

117.4

2454.6


364.4

916.4

488.8

00.0

3286.1

Clubfoot 27911.4

11714.4

17312.2

468.5

117.4

62611.6


242.9

533.7

132.4

117.4

1983.7


30.4

90.6

20.4

00.0

210.4


172.1

322.3

40.7

117.4

951.8


70.9

70.5

20.4

00.0

400.7


10.1

10.1

10.2

00.0

70.1


50.6

271.9

71.3

00.0

751.4


131.6

181.3

71.3

00.0

561.0


30.4

161.1

10.2

117.4

380.7

Encephalocele 150.6

30.4

80.6

50.9

00.0

320.6


712.9

111.4

342.4

112.0

00.0

1302.4

Gastroschisis 542.2

263.2

433.0

40.7

117.4

1302.4

2


506.1

845.9

132.4

00.0

2444.5


131.6

271.9

20.4

00.0

741.4


30874.2

39654.9

16659.6

4126.2

222881.0


91.1

90.6

10.2

00.0

230.4


627.6

835.9

213.9

00.0

2865.3

Omphalocele 180.7

182.2

141.0

40.7

00.0

571.1

2



New JerseyBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







11013.5

1319.2

336.1

00.0

5039.3


111.4

141.0

20.4

00.0

450.8


232.8

513.6

203.7

117.4

1783.3


334.1

735.2

173.1

117.4

2775.1


70.9

60.4

20.4

00.0

230.4


344.2

463.2

112.0

00.0

1633.0


242.9

604.2

91.7

00.0

1582.9


465.7

483.4

203.7

00.0

2023.8


110.4

101.2

161.1

10.2

00.0

390.7


222.7

271.9

81.5

00.0

1021.9


351.4

172.1

201.4

61.1

00.0

821.5


728.8

1289.0

183.3

00.0

3877.2

3


728.8

1289.0

183.3

00.0

3877.2

Trisomy 13 50.2

50.6

90.6

00.0

00.0

210.4

Trisomy 18 230.9

121.5

141.0

50.9

00.0

541.0


8910.9

20614.5

417.6

352.1

67212.5


10.1

80.6

10.2

00.0

270.5


47157.9

90563.9

27751.0

469.4

320859.6

4


81395.

141629.

54285.

576.

538066.


41496.

72160.

27873.

317.

275103.




New JerseyTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)New JerseyTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.380.7

210.4

Trisomy 18 260.6

262.3

541.0


34830.7

67212.5


113224.

538066.


Notes1.Atrial Septal Defect (ASD) only, Patent Foramen Ovale (PFO) coded separately.2.Gastroschisis coded 756.79, Omphalocele coded 756.78.3.ICD9-CM coding update - now includes tricuspid valve regurgitation/insufficiency.4.Only confirmed cases included.

General comments-Hybrid system; Passive with audit, uses ICD9-CM; 2011 live birth file is not final and is missing about 3000 out-of-state births;New web-based systemimplemented July 1, 2009 with reduced reporting of prematurity-related and minor diagnoses.-State only reports live births.



New MexicoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)New MexicoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 112.9

14.2

131.7

00.0

21.1

292.1


14.2

354.6

14.0

137.5

674.9


15.2

437.2

00.0

128.7

797.2


28.4

415.4

27.9

148.0

825.9


00.0

20.4

00.0

00.0

20.2

Gastroschisis 123.1

521.0

506.6

27.9

116.3

836.0

1


00.0

30.7

00.0

11.0

91.1

2


1082.3

10126.2

431.3

1517.1

25436.2


15.2

274.5

15.0

10.7

464.2


14.2

233.0

14.0

31.7

342.5


28.4

364.7

27.9

95.2

674.9


14.2

202.6

311.9

52.9

332.4

2


210.4

91.5

00.0

42.8

171.5

2

Trisomy 13 51.3

28.4

91.2

14.0

21.1

292.1

Trisomy 18 51.3

312.6

91.2

14.0

21.1

402.9


312.6

8511.2

27.9

2112.0

16512.0


2377.

76093.

2516.

17429.

137944.


1215.

38577.

1280.

8797.

70210.




New MexicoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)New MexicoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.985.5

292.1

Trisomy 18 121.0

85.5

402.9


5940.9

16512.0


14428.

137944.


Notes1.Medical records are reviewed to confirm this diagnosis2.Medical records are reviewed to confirm this diagnosis for Environmental Public Health Tracking; NBDPN codes may identify diagnoses that have notbeen confirmed by medical record.

General comments-Active case ascertainment for transposition of great arteries, hypoplastic left heart syndrome, tetralogy, gastroschisis. For Environmental Public HealthTracking (EPHT), medical records are used to confirm diagnoses. The National Birth Defects Prevention Network (NBDPN) codes for heart conditionsare slightly different than the EPHT codes; therefore, some of the heart conditions identified through NPBDN codes have not received medical recordconfirmation.-Unspecified non-livebirths include terminations plus spontaneous abortions (not separated)



New YorkBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)New YorkBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 160.3

50.3

120.5

30.2

00.0

370.3


231.2

401.5

130.9

00.0

1211.0


110.6

612.3

181.3

14.4

1541.3


170.9

511.9

141.0

00.0

2151.8


151677.5

143154.0

66648.4

939.4

582647.9


2594.4

1326.7

1154.3

523.8

14.4

5724.7


392.0

331.2

201.5

14.4

1401.2


20.1

10.0

10.1

00.0

190.2


351.8

471.8

90.7

00.0

2321.9


231.2

411.5

282.0

14.4

2612.1


623.2

1555.8

523.8

313.1

5904.9


894.5

1325.0

795.7

14.4

6705.5


231.2

411.5

151.1

00.0

1841.5

Clubfoot 89715.2

28414.5

37814.3

1349.7

730.6

172914.2


985.0

1475.5

564.1

14.4

6395.3


130.7

110.4

70.5

00.0

650.5


472.4

532.0

211.5

00.0

2241.8


492.5

261.0

110.8

00.0

1431.2


512.6

1325.0

332.4

14.4

5804.8


40.2

60.2

10.1

00.0

370.3


392.0

501.9

251.8

14.4

2672.2


462.4

632.4

372.7

00.0

2402.0


130.7

220.8

70.5

00.0

760.6

Encephalocele 440.7

180.9

170.6

120.9

00.0

930.8


1582.7

392.0

552.1

251.8

00.0

2882.4


422.1

702.6

90.7

313.1

2792.3


90.5

170.6

20.1

00.0

660.5


492.5

682.6

231.7

14.4

2982.5


67367.6

67850.2

30142.4

543.7

458873.7


130.7

210.8

90.7

00.0

940.8



New YorkBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







733.7

813.1

151.1

14.4

3713.1

Omphalocele 641.1

291.5

301.1

110.8

313.1

1381.1


21711.1

2198.3

1037.5

14.4

10058.3


211.1

271.0

151.1

00.0

1191.0


633.2

1254.7

554.0

14.4

4914.0


794.0

1144.3

423.1

313.1

5654.6


221.1

261.0

120.9

00.0

1161.0


1065.4

1084.1

543.9

14.4

5304.4


392.0

672.5

231.7

00.0

2742.3


995.1

1054.0

755.5

14.4

5804.8


550.9

321.6

461.7

171.2

00.0

1521.3


351.8

602.3

372.7

00.0

3022.5


1542.6

351.8

602.3

352.5

00.0

2922.4


392.0

361.4

201.5

00.0

1551.3


140.7

150.6

130.9

00.0

690.6

Trisomy 13 340.6

191.0

180.7

60.4

00.0

790.6

Trisomy 18 571.0

402.0

411.5

100.7

00.0

1511.2


26113.3

35813.5

1188.6

14.4

148912.3


120.6

240.9

90.7

00.0

1000.8


82842.3

126747.8

56140.8

1043.7

562546.3


195619.

265201.

137501.

2287.

1215430.


99566.

134978.

70942.

1143.

622414.




New YorkTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)New YorkTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.6241.0

790.6

Trisomy 18 690.7

823.4

1511.2


77432.3

148912.3


239296.

1215430.




North CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)North CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 932.7

271.8

373.7

52.5

44.6

1842.9


312.1

202.0

52.5

11.2

1141.8


130.9

393.9

52.5

66.9

1091.7


312.1

191.9

21.0

22.3

1502.4


91461.2

49749.3

7637.4

6878.3

326351.7


2316.6

1036.9

656.4

94.4

89.2

4226.7


151.0

90.9

10.5

11.2

470.7


100.7

30.3

00.0

00.0

220.3


191.3

222.2

31.5

11.2

951.5


453.0

232.3

52.5

66.9

2133.4


624.2

646.3

146.9

910.4

3655.8


573.8

515.1

157.4

55.8

3986.3


30.2

50.5

00.0

00.0

200.3

Clubfoot 74721.3

27518.4

19619.4

3014.8

1112.7

126520.0


614.1

424.2

115.4

33.5

3245.1


110.7

80.8

21.0

00.0

500.8


281.9

80.8

31.5

11.2

741.2


674.5

171.7

31.5

33.5

1903.0


503.3

474.7

42.0

44.6

3816.0


251.7

282.8

73.4

33.5

1752.8


201.3

171.7

00.0

22.3

1111.8


110.7

101.0

42.0

11.2

530.8

Encephalocele 361.0

211.4

161.6

21.0

11.2

781.2


972.8

291.9

171.7

21.0

22.3

1472.3


624.2

444.4

52.5

89.2

2844.5


271.8

161.6

21.0

44.6

861.4


362.4

272.7

52.5

00.0

1602.5


39351.7

12824.8

5754.0

3170.6

180555.9


130.9

90.9

00.0

11.2

440.7


885.9

484.8

94.4

1112.7

3335.3



North CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 772.2

402.7

242.4

63.0

11.2

1502.4


1359.0

797.8

167.9

89.2

5138.1


312.1

121.2

73.4

22.3

1031.6


553.7

585.8

42.0

44.6

2584.1


1047.0

656.4

94.4

89.2

4366.9


151.0

171.7

10.5

00.0

580.9


503.3

393.9

63.0

11.2

2223.5


453.0

505.0

73.4

22.3

2554.0


765.1

323.2

136.4

910.4

2724.3


391.1

120.8

161.6

42.0

22.3

731.2


453.0

252.5

83.9

33.5

2033.2


872.5

271.8

141.4

63.0

33.5

1372.2


362.4

212.1

21.0

78.1

1362.2


332.2

181.8

21.0

66.9

1141.8

Trisomy 13 391.1

312.1

121.2

10.5

00.0

851.3

Trisomy 18 1002.9

402.7

323.2

83.9

22.3

1903.0


1439.6

13913.8

2110.3

1921.9

79212.5


100.7

121.2

00.0

00.0

781.2


62641.9

56656.1

6732.9

4046.1

284745.1


149337.

100827.

20334.

8683.

631134.


75953.

51511.

10556.

4391.

323148.




North CarolinaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)North CarolinaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.0283.4

851.3

Trisomy 18 1051.9

8310.2

1903.0


36544.7

79212.5


81596.

631134.


General comments-Fetal deaths are those greater than 20 weeks gestational age.-There is no gestational age cut-off for terminations.



North DakotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)North DakotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 195.2

112.2

00.0

00.0

24.1

224.9


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

24.1

30.7


00.0

00.0

00.0

12.1

102.2


10122.2

423.6

463.5

97199.3

37984.1


82.2

00.0

317.7

00.0

12.1

132.9


00.0

00.0

00.0

12.1

30.7


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

30.7


00.0

15.9

231.7

816.4

5812.9


00.0

00.0

231.7

1122.6

368.0


00.0

00.0

347.6

918.5

6213.8


00.0

00.0

00.0

12.1

132.9


112.2

00.0

00.0

12.1

92.0


00.0

00.0

00.0

510.3

184.0


00.0

00.0

00.0

00.0

51.1


112.2

00.0

00.0

12.1

40.9

Encephalocele 10.3

00.0

00.0

00.0

00.0

10.2


92.5

112.2

00.0

00.0

12.1

112.4

Gastroschisis 185.0

224.4

00.0

115.9

1530.8

368.0

1


00.0

00.0

00.0

00.0

92.0

Hypospadias* 6132.9

242.6

112.1

131.3

520.0

7030.4


00.0

00.0

00.0

36.2

102.2

Omphalocele 41.1

00.0

00.0

00.0

12.1

51.1

2


112.2

15.9

115.9

1326.7

6314.0


00.0

00.0

00.0

12.1

40.9


112.2

00.0

00.0

12.1

143.1


00.0

00.0

00.0

48.2

92.0


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

36.2

153.3



North DakotaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

714.4

276.0


00.0

00.0

00.0

00.0

12.1

10.2


00.0

00.0

00.0

24.1

184.0


00.0

00.0

00.0

12.1

40.9


00.0

00.0

00.0

12.1

40.9

Trisomy 18 51.4

112.2

00.0

00.0

00.0

61.3


112.2

317.7

231.7

12.1

4510.0


336.7

635.4

231.7

4082.2

18240.4

3


818.

1697.

630.

4867.

45045.


470.

828.

319.

2506.

23045.




North DakotaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)North DakotaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.212.2

61.3


1737.5

4510.0


4531.

45045.


Notes1.North Dakota uses ICD-9 codes and cannot distinguish between gastroschisis and omphalocele unless reported. From 2008 onwards there have been fewcases of omphalocele reported with ICD-9-CM codes.2.North Dakota Vital Statistics has started collecting data using ICD-10 codes for Omphalocele from 2008 onwards in the birth certificates.3.North Dakota uses ICD-9 code 745.4 for confirmed diagnosis of ventricular septal defect; cannot distinguish 745.487 and 745.498 CDC/BPA codes.

General comments-During the reporting period 2014, data from the Division of Medical Genetics at the University of North Dakota School of Medicine and HealthSciences were linked to the registry to enhance the reporting in the North Dakota Birth Defects Monitoring System and includes data for births withdefects for infants born in the calendar year 2011 from the Division of Medical Genetics program.-North Dakota Vital Statistics collects data using ICD-10 codes.-North Dakota Vital Statistics implemented electronic registration of births from 2006 onwards.-Statistical records of induced termination and spontaneous termination are filed. Defects are not recorded.-The North Dakota Birth Defects Monitoring System master registry is translated to ICD-9 using ICD-10 codes from fetal death, death and birthcertificates.-There were no major methodological changes in the registry for the year 2014.-Trisomy 13 and Trisomy 18 were collected in the birth certificates up to the year 2005; these conditions are not being collected in the new electronicbirth certificates from the year 2006 onwards.



icw6

Highlight

OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)







72.8

22.9

26.4

00.0

523.5

1


72.8

34.4

13.2

00.0

885.9

1


197.7

34.4

26.4

00.0

1187.9

1

Spina bifida without anencephalus403.5

31.2

34.4

00.0

00.0

463.1

2

Trisomy 13 100.9

20.8

00.0

00.0

00.0

120.8

3

Trisomy 18 151.3

83.2

00.0

00.0

00.0

231.5

3


2811.3

811.6

39.6

146.3

16711.2

3


24818.

6887.

3129.

216.

148592.




OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)



0.731.7

120.8

3

Trisomy 18 70.5

169.2

231.5

3


7040.2

16711.2

3


17407.

148592.


Notes1.Data pulled on July 14, 2011.2.Data pulled on July 5, 2011.3.Data pulled on August 23, 2011.

General comments-Caution: Ohio considers rates based on numerators of less than 20 unstable.-State only reports live births.-Trisomy 13, 18 and 21 counts include probable cases.



OklahomaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)OklahomaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 432.5

52.0

51.3

11.6

82.7

622.3


00.0

61.6

00.0

62.0

331.2


20.8

143.7

57.8

41.3

562.1


62.4

133.5

00.0

51.7

883.3


20182.0

17245.7

1828.0

25082.9

188269.8


1005.9

166.5

133.5

11.6

144.6

1455.4


10.4

20.5

00.0

31.0

170.6


10.4

00.0

00.0

20.7

110.4


10.4

30.8

00.0

41.3

351.3


52.0

92.4

23.1

113.6

1063.9


114.5

236.1

34.7

309.9

2248.3


197.7

195.0

57.8

299.6

2178.0

Clubfoot 34620.3

2811.4

5614.9

57.8

5016.6

49518.4


135.3

195.0

23.1

196.3

1485.5


20.8

20.5

00.0

31.0

261.0


52.0

30.8

00.0

31.0

421.6


31.2

10.3

00.0

20.7

271.0


52.0

71.9

00.0

103.3

913.4


20.8

20.5

00.0

51.7

271.0


52.0

154.0

11.6

72.3

1084.0


72.9

30.8

00.0

82.7

582.2


00.0

41.1

11.6

20.7

190.7

Encephalocele 150.9

52.0

20.5

11.6

20.7

250.9


422.5

41.6

82.1

00.0

93.0

632.3


72.9

215.6

46.2

309.9

1736.4


41.6

61.6

00.0

51.7

361.3


20.8

82.1

00.0

93.0

542.0


4435.3

178.9

824.4

4328.0

51337.2


10.4

20.5

00.0

41.3

190.7


104.1

102.7

11.6

206.6

1144.2



OklahomaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 432.5

72.9

82.1

00.0

41.3

622.3


62.4

92.4

00.0

113.6

913.4


62.4

71.9

00.0

113.6

833.1


124.9

246.4

46.2

155.0

1656.1


83.3

174.5

11.6

165.3

1445.3


10.4

30.8

00.0

31.0

220.8


124.9

123.2

34.7

134.3

1094.0


72.9

143.7

00.0

103.3

1033.8


166.5

154.0

23.1

144.6

1304.8


231.3

20.8

61.6

11.6

93.0

411.5


52.0

123.2

00.0

82.7

943.5


523.0

41.6

41.1

00.0

72.3

692.6


41.6

61.6

00.0

20.7

351.3


41.6

61.6

00.0

20.7

351.3

Trisomy 13 201.2

20.8

30.8

00.0

31.0

281.0

Trisomy 18 372.2

72.9

41.1

11.6

82.7

572.1


2610.6

6717.8

710.9

309.9

35413.1


10.4

41.1

00.0

20.7

271.0


13856.3

18348.6

2132.7

15049.7

146954.5


24526.

37651.

6418.

30156.

269685.


12450.

19174.

3275.

15337.

137727.




OklahomaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)OklahomaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.973.1

281.0

Trisomy 18 371.5

208.8

572.1


14864.9

35413.1


22809.

269685.


General comments-Currently do not collect cloacal exstrophy.-Fetal deaths are defined as baby born dead (without a heart rate), at or after 20th gestational week. Includes babies that died during labor.-Oklahoma does not use the unspecified non-live birth category.-Terminations are defined as fetus terminated by parental choice prior to 37 weeks. When labor is induced to deliver a fetus who is dead prior to the onsetof labor it is not considered an elective termination.



Puerto RicoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)Puerto RicoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)


Defect Hispanic Total** NotesAnencephalus 96

4.4964.4


251.4

1


482.8

2


351.6


50923.1

Atrioventricular septal defect (Endocardial cushion defect) 1135.1

1135.1

3


30.2

2


663.0


1326.0


1436.5

Clubfoot 39217.8

39217.8


813.7


150.7


422.4


190.9

Encephalocele 241.1

241.1


1084.9

4


431.9


38634.1


1295.8

Omphalocele 552.5

552.5

4


2129.6


251.1


1135.1


894.0

Total anomalous pulmonary venous connection 140.6

140.6


542.4

Dextro-transposition of great arteries (d-TGA) 542.4

542.4


251.1

5


231.3

Trisomy 13 341.5

341.5

Trisomy 18 873.9

873.9



Puerto RicoBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)


Defect Hispanic Total** NotesTrisomy 21 (Down syndrome) 324

14.732414.7


55825.3

6


220639.


113226.




Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.2105.4

341.5

Trisomy 18 502.5

3720.0

873.9


12265.9

32414.7


18512.

220639.


Notes1.The Birth Defects Surveillance and Prevention System (BDSPS) began monitoring this birth defect in 2008.2.The BDSPS began monitoring this birth defect in 2008.3.Atrioventricular septal defect only includes AV Canal.4.Puerto Rico uses clinical diagnosis to distinguish between gastroschisis and omphalocele.5.Tricuspid atresia excludes tricuspid stenosis and hypoplasia.6.Ventricular septal defect (VSD) excludes probable diagnosis and we exclude inlet/posterior type VSD in the presence of Atrioventricular (AV) Canal.

General comments-Fetal deaths include spontaneous abortions and stillbirths.-Puerto Rico does not use the unspecified non-livebirth category.-Puerto Rico has no gestational age cut off for terminations.-The coding system used was ICD 9 CM.



Rhode IslandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)Rhode IslandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 51.4

00.0

10.8

00.0

00.0

61.1


12.1

10.8

00.0

00.0

50.9


00.0

32.5

00.0

121.6

50.9


12.1

00.0

00.0

00.0

71.2


2961.8

4336.3

418.5

364.9

20937.2


92.6

00.0

10.8

00.0

00.0

101.8


12.1

10.8

00.0

00.0

40.7


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

30.5


12.1

32.5

00.0

00.0

122.1


00.0

65.1

14.6

00.0

285.0


24.3

54.2

29.2

121.6

346.1

Clubfoot 5415.5

1123.4

1714.3

29.2

00.0

9116.2


24.3

32.5

14.6

00.0

91.6


12.1

00.0

00.0

00.0

20.4


12.1

21.7

00.0

00.0

50.9


12.1

00.0

00.0

00.0

10.2


12.1

32.5

14.6

00.0

142.5


00.0

10.8

00.0

00.0

71.2


00.0

00.0

00.0

00.0

30.5

Encephalocele 30.9

00.0

00.0

00.0

00.0

40.7


113.2

12.1

32.5

00.0

00.0

173.0

Gastroschisis 102.9

48.5

97.6

00.0

00.0

234.1


24.3

10.8

313.9

00.0

142.5


2292.4

4370.8

438.3

00.0

22578.2


12.1

00.0

00.0

00.0

20.4


48.5

54.2

00.0

00.0

234.1

Omphalocele 82.3

24.3

43.4

00.0

00.0

142.5


36.4

86.8

14.6

121.6

315.5


12.1

10.8

00.0

121.6

101.8



Rhode IslandBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







36.4

86.8

14.6

00.0

223.9


24.3

21.7

00.0

00.0

101.8


00.0

00.0

00.0

00.0

00.0


36.4

108.4

14.6

00.0

295.2


36.4

65.1

00.0

00.0

244.3


24.3

43.4

00.0

00.0

193.4


10.3

00.0

21.7

00.0

00.0

30.5


00.0

54.2

00.0

00.0

162.8


30.9

00.0

43.4

00.0

00.0

91.6


00.0

10.8

00.0

121.6

20.4


00.0

10.8

00.0

121.6

20.4

Trisomy 13 41.1

24.3

32.5

00.0

00.0

112.0

Trisomy 18 123.4

24.3

21.7

00.0

00.0

203.6


714.9

1512.7

29.2

00.0

8915.8


2349.0

4739.7

1150.9

121.6

23642.0

1


4695.

11850.

2163.

462.

56195.


2380.

6073.

1044.

246.

28759.




Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.344.2

112.0

Trisomy 18 71.5

1111.5

203.6


4244.0

8915.8


9552.

56199.


Notes1.Probable cases included.

General comments-Counts for holoprosencephaly, cloacal exstrophy, craniosynostosis, Turner syndrome, and deletion 22 q11 are unavailable.-Maternal race/ethnicity and age numbers for 2009 prenatally ascertained cases are not available.-Prenatally-ascertained and post-newborn inpatient discharge cases were collected beginning in 2009.-Stillbirths are fetal deaths that begin at 20 weeks of gestation.-Terminations are induced fetal deaths that begin at 20 weeks of gestation.



South CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)South CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 412.4

222.2

155.3

00.0

00.0

802.6


80.8

20.7

00.0

00.0

170.6


70.7

10.4

12.0

00.0

170.6


60.6

51.8

12.0

00.0

270.9


808.1

4014.3

47.8

00.0

2759.0

1


945.5

666.7

134.6

12.0

00.0

1765.8


90.9

00.0

00.0

00.0

160.5


20.2

00.0

00.0

00.0

50.2


70.7

31.1

00.0

00.0

280.9


464.6

155.3

35.9

00.0

1575.1


393.9

93.2

35.9

00.0

1715.6


30.3

10.4

00.0

17.8

200.7


60.6

31.1

00.0

00.0

220.7


222.2

134.6

00.0

00.0

832.7


282.8

51.8

00.0

00.0

732.4


50.5

10.4

23.9

00.0

190.6

Encephalocele 211.2

121.2

82.9

23.9

00.0

431.4


181.1

70.7

20.7

00.0

00.0

280.9

Gastroschisis 462.7

101.0

62.1

12.0

00.0

642.1


404.0

72.5

23.9

00.0

1053.4


616.2

186.4

35.9

17.8

1936.3

Omphalocele 211.2

111.1

20.7

00.0

17.8

361.2


838.4

196.8

23.9

17.8

2227.3


212.1

41.4

00.0

00.0

571.9


222.2

31.1

47.8

17.8

973.2


404.0

134.6

23.9

00.0

1274.2


212.1

72.5

35.9

00.0

1103.6


585.9

134.6

12.0

00.0

1525.0


181.8

62.1

12.0

17.8

862.8


523.0

171.7

51.8

00.0

17.8

782.6



South CarolinaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







131.3

41.4

12.0

00.0

331.1

Trisomy 13 120.7

121.2

31.1

12.0

00.0

291.0

2

Trisomy 18 321.9

181.8

62.1

00.0

00.0

561.8

3


646.5

2910.3

611.7

00.0

2538.3

4


33333.7

14652.0

1631.2

215.6

111136.4

5


98949.

28058.

5128.

1283.

305245.




South CarolinaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)South CarolinaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.731.7

120.8

3

Trisomy 18 70.5

169.2

231.5

3


7040.2

16711.2

3


32981.

305245.


Notes1.Atrial Septal Defect was dropped beginning in 2009.2.Trisomy 13 was collected beginning in 2008.3.Trisomy 18 was collected beginning in 2008.4.Down Syndrome was collected beginning in 2008.5.South Carolina only includes confirmed cases.

General comments-Abortions in South Carolina are not usually performed after 24 weeks gestation.-South Carolina Fetal Deaths must be at least 20 weeks gestation or 350 grams or more.-Total anomalous pulmonary venous connection (TAPVC) not collected in South Carolina until 2013.-Turner syndrome, Deletion 22a11.2, Craniosynostosis, Clubfoot, Congenital posterior urethral valves, Cloacal exstrophy, and Small intestinalatresia/stenosis not collected in South Carolina.



TennesseeBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)TennesseeBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 361.3

111.3

82.1

11.2

00.0

571.4


182.1

20.5

11.2

00.0

511.2


40.5

71.8

22.4

00.0

330.8


60.7

82.1

00.0

00.0

842.0


1596185.7

381100.6

6477.0

116.2

5219126.4


1194.3

394.5

123.2

44.8

00.0

1744.2

1


80.9

51.3

33.6

00.0

411.0


10.1

10.3

00.0

00.0

200.5


91.0

41.1

00.0

116.2

771.9


202.3

82.1

00.0

.

.1343.3


374.3

277.1

33.6

.

.2927.1


515.9

256.6

56.0

116.2

3438.3


515.9

338.7

22.4

00.0

2927.1


60.7

20.5

11.2

00.0

370.9


222.6

30.8

56.0

00.0

932.3


414.8

164.2

22.4

00.0

1804.4


101.2

51.3

33.6

00.0

501.2

Encephalocele 371.3

121.4

112.9

00.0

00.0

601.5


782.8

161.9

123.2

00.0

00.0

1062.6


242.8

195.0

22.4

00.0

2365.7

2


333.8

143.7

11.2

00.0

1543.7


473107.9

6533.6

2763.4

267.8

2255106.8

Omphalocele 752.7

252.9

92.4

00.0

00.0

1092.6

3


8610.0

287.4

78.4

116.2

3789.2


212.4

61.6

22.4

00.0

761.8


475.5

225.8

22.4

116.2

2586.2


505.8

236.1

33.6

00.0

2155.2


212.4

215.5

33.6

00.0

1463.5


536.2

205.3

33.6

00.0

2486.0


475.5

215.5

56.0

00.0

2285.5



TennesseeBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







812.9

192.2

92.4

33.6

00.0

1122.7


121.4

20.5

00.0

00.0

591.4

4

Trisomy 13 130.5

121.4

20.5

11.2

00.0

300.7

Trisomy 18 501.8

131.5

92.4

11.2

00.0

731.8


11613.5

6617.4

1416.9

00.0

58814.2


41147.8

20153.1

3238.5

232.3

198248.0

5


85941.

37857.

8307.

619.

413057.


43839.

19368.

4262.

295.

211216.




TennesseeTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)TennesseeTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.692.1

300.7

Trisomy 18 481.3

255.9

731.8


23354.7

58814.2


42589.

413057.


Notes1.Not use CDC/BPA codes. Cannot distinguish 745.487 from other VSD.2.ICD-9 Procedure Code = 54.713.ICD-9 Procedure Code not equal to 54.714.Not use CDC/BPA codes. Cases with 746.106 are included in this category.5.Not use CDC/BPA codes. Information includes the entire range.

General comments-For data before 07/01/2010, Fetal deaths are defined as 500 grams or more, or 22 weeks gestation or more.-For data on or after 07/01/2010, Fetal deaths are defined as 350 grams or more, or 20 weeks gestation or more.-Terminations are not available.



TexasBirth Defects Counts and Prevalence 2007 - 2009 (Prevalence per 10,000 Live Births)TexasBirth Defects Counts and Prevalence 2007 - 2009 (Prevalence per 10,000 Live Births)






Anencephalus 852.1

261.9

2003.3

61.3

00.0

3262.7


433.1

2083.4

92.0

29.2

3863.2


221.6

3085.1

204.4

29.2

4253.5


272.0

1512.5

81.7

00.0

2922.4


98671.7

401366.0

23250.7

1464.4

796865.6


2125.1

725.2

2403.9

122.6

14.6

5394.4


80.6

500.8

71.5

29.2

890.7


20.1

40.1

10.2

00.0

200.2


151.1

611.0

71.5

00.0

1531.3


342.5

1772.9

173.7

00.0

3663.0


574.1

5028.3

245.2

313.8

8877.3


735.3

3736.1

286.1

00.0

7536.2


503.6

3135.1

163.5

14.6

6105.0


100.7

520.9

40.9

00.0

1030.8


342.5

1131.9

30.7

00.0

2392.0


312.3

1762.9

92.0

14.6

3502.9


20.1

410.7

51.1

00.0

760.6

Encephalocele 270.7

151.1

741.2

30.7

00.0

1241.0


992.4

161.2

1302.1

81.7

14.6

2572.1


674.9

4066.7

122.6

14.6

7496.2


362.6

1131.9

51.1

14.6

2552.1


46766.7

122739.6

12954.9

762.5

362958.5


846.1

3315.4

153.3

418.4

6825.6

Omphalocele 781.9

322.3

1242.0

81.7

14.6

2492.1


16211.8

71411.7

265.7

418.4

128810.6


211.5

1051.7

20.4

00.0

1911.6


523.8

3505.8

224.8

313.8

6545.4


856.2

3826.3

194.1

313.8

7476.2


342.5

2584.2

51.1

14.6

4493.7


584.2

2143.5

265.7

29.2

4814.0



TexasBirth Defects Counts and Prevalence 2007 - 2009 (Prevalence per 10,000 Live Births)







551.3

151.1

1312.2

71.5

14.6

2111.7


382.8

2143.5

153.3

14.6

4473.7

1


1623.9

392.8

2023.3

153.3

14.6

4213.5


332.4

1121.8

71.5

00.0

2281.9


151.1

440.7

30.7

00.0

940.8

Trisomy 13 531.3

171.2

711.2

71.5

00.0

1491.2

Trisomy 18 1052.5

352.5

1752.9

183.9

00.0

3382.8


1359.8

90914.9

5812.7

313.8

165013.6


66348.2

445773.3

21847.6

1150.6

780764.3

2


137525.

608343.

45799.

2174.

1214294.


70030.

310052.

23517.

1120.

620606.




TexasTrisomy Counts and Prevalence by Maternal Age 2007 - 2009 (Prevalence per 10,000 Live Births)TexasTrisomy Counts and Prevalence by Maternal Age 2007 - 2009 (Prevalence per 10,000 Live Births)



1.0412.9

1491.2

Trisomy 18 1831.7

15510.9

3382.8


72350.8

165013.6


142460.

1214294.


Notes1.Transposition of the great arteries: As Texas does not use the new CDC BPA codes and the exclusion criteria has 745.180, those defects of doubleoutlet right ventricle which we have coded into 745.180 will not be counted in this defect.2.Ventricular Septal Defect (VSD): We are unable to distinguish inlet VSD from other types of VSD.

General comments-Due to migration to Oracle data base, Texas cannot access 2010 or later data at this time.-In Texas, stillborn is defined as the spontaneous death of a product of conception prior to the complete expulsion or extraction from its mother,regardless of the length of gestation. The onset of labor may be natural or induced. The key is that the death of the fetus was spontaneous and not a resultof an intended procedure.-Our case definition includes livebirths, stillbirths, and terminations at any length of gestation and any birth weight.-Texas only reports confirmed and definite diagnoses for any defect reported. Possible/probable cases are not given.-Texas uses the CDC/BPA coding system, but does not use the new CDC/BPA codes.



UtahBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)UtahBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 552.7

13.8

133.0

22.1

12.9

732.7


13.8

40.9

00.0

00.0

140.5


27.5

347.9

55.3

12.9

1074.0


00.0

214.9

66.4

12.9

1194.4


1141.3

20046.5

5255.4

1543.7

115543.1


1416.9

27.5

266.0

99.6

38.7

1816.8


13.8

20.5

11.1

00.0

200.7


00.0

00.0

11.4

00.0

70.3


00.0

51.2

00.0

00.0

421.6


27.5

153.5

22.1

12.9

1395.2


311.3

327.4

22.1

38.7

2308.6


00.0

194.4

88.5

617.5

1525.7


13.8

00.0

11.1

00.0

100.4


311.3

409.3

55.3

12.9

26910.0


13.8

10.2

00.0

00.0

150.6


13.8

71.6

33.2

12.9

692.6


00.0

51.2

22.1

00.0

431.6


311.3

4710.9

44.3

38.7

30411.4


00.0

20.5

33.2

38.7

271.0


00.0

51.2

11.1

411.7

451.7


13.8

112.6

22.1

12.9

481.8


00.0

20.5

11.1

12.9

361.3

Encephalocele 160.8

00.0

51.2

00.0

00.0

220.8


502.4

00.0

184.2

44.3

12.9

742.8

Gastroschisis 914.4

311.3

204.6

99.6

38.7

1264.7


27.5

102.3

00.0

00.0

481.8


27.5

122.8

22.1

00.0

923.4


1286.1

4118.8

1938.8

317.0

89365.0


00.0

30.8

00.0

00.0

110.5


27.5

327.4

66.4

12.9

1796.7



UtahBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 613.0

27.5

143.3

22.1

00.0

803.0


27.5

5312.3

1920.3

720.4

37514.0


00.0

40.9

44.3

00.0

301.1


13.8

163.7

88.5

12.9

1003.7


13.8

163.7

66.4

12.9

923.4


00.0

30.7

00.0

00.0

120.4


13.8

40.9

33.2

00.0

401.5


27.5

143.3

22.1

25.8

953.5


13.8

173.9

88.5

38.7

843.1


231.1

00.0

112.6

22.1

38.7

391.5


13.8

194.4

44.3

12.9

1204.5


482.3

00.0

71.6

22.1

00.0

572.1


13.8

71.6

33.2

00.0

361.3


13.8

71.6

33.2

00.0

361.3

Trisomy 13 281.4

13.8

163.7

22.1

00.0

471.8

Trisomy 18 713.5

311.3

163.7

11.1

25.8

953.5


415.0

8620.0

1819.2

514.6

41215.4


00.0

102.3

00.0

25.8

632.4


1245.1

13631.6

1819.2

720.4

65824.6


2662.

43056.

9381.

3433.

267825.


1393.

21818.

4896.

1762.

137473.




UtahTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)UtahTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.2176.4

471.8

Trisomy 18 592.4

3613.5

953.5


18669.6

41215.4


26721.

267825.


General comments-All pregnancy terminations include terminations at any number of weeks gestation.-All stillbirths are based on greater than or equal to 20 weeks gestation.-Utah does not use the unspecified non-live birth category.



VermontBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)VermontBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 31.0

00.0

00.0

00.0

00.0

31.0


00.0

00.0

00.0

00.0

51.6


00.0

00.0

00.0

00.0

175.4


379.2

4105.8

118.8

1277.8

17054.4


155.1

126.4

00.0

00.0

00.0

175.4


00.0

00.0

118.8

00.0

20.6


00.0

00.0

00.0

00.0

185.8


00.0

00.0

00.0

00.0

154.8


00.0

00.0

00.0

00.0

237.4


00.0

00.0

00.0

00.0

258.0


00.0

126.5

00.0

00.0

10.3


00.0

00.0

00.0

00.0

103.2


00.0

00.0

00.0

00.0

51.6


00.0

00.0

00.0

00.0

10.3

Encephalocele 20.7

00.0

00.0

00.0

00.0

20.6


82.7

00.0

00.0

00.0

00.0

82.6

Gastroschisis 82.7

00.0

00.0

00.0

00.0

113.5

1


00.0

00.0

00.0

00.0

103.2


151.5

00.0

135.8

00.0

11068.2

Omphalocele 20.7

126.4

00.0

00.0

00.0

31.0


00.0

00.0

00.0

00.0

3711.8


00.0

00.0

00.0

00.0

134.2


00.0

00.0

00.0

00.0

175.4


00.0

00.0

118.8

00.0

144.5

2


00.0

00.0

00.0

00.0

92.9


252.8

00.0

118.8

00.0

175.4


00.0

00.0

00.0

00.0

134.2


82.7

00.0

00.0

00.0

00.0

82.6


00.0

00.0

00.0

00.0

10.3

Trisomy 13 10.3

00.0

00.0

00.0

00.0

10.3



VermontBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Trisomy 18 41.4

00.0

00.0

00.0

00.0

41.3


126.4

00.0

118.8

00.0

4213.4


379.2

379.4

237.6

00.0

19763.0

3


379.

378.

532.

36.

31267.


194.

185.

279.

21.

16136.




VermontTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)VermontTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.400.0

10.3

Trisomy 18 31.1

12.0

41.3


2243.9

4213.4


5016.

31267.


Notes1.Vermont actively reviews hospital records and repair procedures to differentiate between Gastroschisis and Omphalocele.2.Vermont's program only collects information on small intestinal atresia at this time.3.Vermont uses ICD-9 codes, but does not include probable cases.

General comments-Vermont birth data represents births to Vermont residents, regardless of which state the birth occurred in. Non-resident births occurring in Vermont areexcluded.-Vermont's program only collects data on live births and predominately uses the ICD-9-CM coding system.



VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 311.0

100.9

101.5

51.3

00.0

581.1

1


111.0

50.7

20.5

113.4

350.7


141.2

142.1

10.3

00.0

490.9


90.8

71.0

20.5

00.0

711.4


1373121.1

1100162.2

548147.5

793.5

5959113.4


973.2

544.8

162.4

61.6

00.0

1743.3


60.5

10.1

20.5

00.0

280.5


20.2

00.0

00.0

00.0

70.1


131.1

91.3

10.3

00.0

681.3


201.8

182.7

41.1

00.0

1412.7


383.4

497.2

174.6

00.0

2544.8


403.5

324.7

225.9

00.0

3045.8


797.0

385.6

174.6

113.4

3146.0

Clubfoot 30610.2

938.2

608.8

215.7

00.0

4889.3


514.5

294.3

184.8

00.0

2564.9


131.1

40.6

20.5

00.0

380.7


201.8

71.0

41.1

00.0

541.0


252.2

91.3

61.6

00.0

731.4


30.3

00.0

00.0

00.0

60.1


373.3

274.0

10.3

00.0

1382.6


272.4

101.5

92.4

00.0

991.9


111.0

131.9

51.3

00.0

511.0

Encephalocele 160.5

70.6

81.2

10.3

00.0

330.6


742.5

322.8

131.9

30.8

00.0

1232.3

Gastroschisis 592.0

232.0

182.7

30.8

00.0

1032.0

2


575.0

233.4

133.5

00.0

2073.9


272.4

131.9

61.6

00.0

1142.2


28750.1

10129.1

9147.7

127.0

148955.4


111.0

40.6

00.0

00.0

290.6


332.9

121.8

51.3

00.0

1482.8



VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 170.6

111.0

30.4

30.8

00.0

340.6

2


15213.4

9814.4

6417.2

00.0

60011.4


161.4

71.0

61.6

00.0

591.1


403.5

365.3

102.7

113.4

2084.0


484.2

202.9

71.9

00.0

1773.4


151.3

40.6

10.3

00.0

571.1


494.3

294.3

143.8

00.0

2063.9


332.9

294.3

51.3

113.4

1452.8


726.4

284.1

215.7

113.4

2484.7


311.0

60.5

71.0

71.9

00.0

511.0


272.4

131.9

102.7

00.0

1272.4


581.9

211.9

111.6

82.2

00.0

991.9


131.1

91.3

61.6

00.0

501.0

3

Trisomy 13 150.5

100.9

111.6

20.5

113.4

390.7

Trisomy 18 331.1

181.6

152.2

61.6

00.0

721.4


14913.1

12418.3

4311.6

00.0

67912.9


70.6

111.6

20.5

00.0

420.8


46841.3

44064.9

18950.9

566.8

251847.9

4


113377.

67824.

37147.

749.

525433.


57274.

34658.

19090.

371.

268746.




VirginiaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)VirginiaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.5161.9

390.7

Trisomy 18 310.7

414.8

721.4


31236.3

67912.9


85852.

525433.


Notes1.Includes probable cases.2.Based on ICD-9 code, used only in diagnoses after 10/1/09.3.Includes cases of tricuspid stenosis.4.Includes probable cases, cannot exclude Inlet VSD.



icw6

Highlight

West VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)West VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 404.1

00.0

17.9

00.0

00.0

424.0


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

80.8


00.0

00.0

00.0

00.0

141.3


2465.0

539.5

319.6

00.0

1238119.1


252.6

00.0

00.0

00.0

00.0

272.6


00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

60.6


00.0

00.0

00.0

00.0

30.3


12.7

00.0

00.0

00.0

686.5


12.7

00.0

16.5

00.0

696.6


00.0

00.0

00.0

00.0

353.4

Clubfoot 11812.2

718.9

215.8

00.0

00.0

16415.8


12.7

00.0

00.0

00.0

373.6


38.1

00.0

00.0

00.0

646.2


00.0

00.0

00.0

00.0

40.4


12.7

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

10.1


25.4

00.0

00.0

00.0

212.0


00.0

00.0

00.0

00.0

201.9


00.0

00.0

00.0

00.0

90.9

Encephalocele 20.2

00.0

00.0

00.0

00.0

40.4


111.1

00.0

00.0

00.0

00.0

161.5


12.7

00.0

00.0

00.0

504.8


12.7

00.0

00.0

00.0

232.2


421.9

00.0

00.0

00.0

22044.6


00.0

00.0

00.0

00.0

80.8


12.7

00.0

00.0

00.0

393.8


00.0

00.0

00.0

00.0

504.8



West VirginiaBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

80.8


12.7

17.9

00.0

00.0

302.9


00.0

00.0

00.0

00.0

383.7


00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

313.0


00.0

00.0

00.0

00.0

343.3


12.7

00.0

00.0

00.0

393.8


20.2

00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

292.8


141.4

00.0

00.0

00.0

00.0

171.6


00.0

00.0

00.0

00.0

101.0


00.0

00.0

00.0

00.0

101.0

Trisomy 13 40.4

00.0

00.0

00.0

00.0

70.7

Trisomy 18 80.8

12.7

00.0

00.0

00.0

101.0


25.4

00.0

00.0

00.0

757.2


00.0

00.0

00.0

00.0

40.4


410.8

00.0

00.0

00.0

30629.4


3695.

1267.

1527.

122.

103974.


1825.

596.

449.

59.

49307.




West VirginiaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)West VirginiaTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.311.2

70.7

Trisomy 18 60.6

33.5

101.0


1719.6

757.3


8664.

103374.


General comments-Birth defects defined by ICD-9 coding.-No methodological changes during this period.-Probable cases are included.-Stillbirths and terminations per birth defect are not collected.



WisconsinBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)WisconsinBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 271.1

30.9

72.1

42.8

00.0

451.4


20.6

10.3

10.7

00.0

160.5


20.6

133.9

00.0

00.0

310.9


10.3

00.0

00.0

12.0

180.5


12837.6

13540.7

4329.9

4690.9

141342.6


502.1

51.5

41.2

10.7

00.0

611.8


00.0

00.0

00.0

00.0

20.1


00.0

00.0

00.0

00.0

70.2


10.3

41.2

21.4

00.0

381.1


72.1

61.8

42.8

00.0

902.7


82.3

82.4

32.1

24.0

752.3


154.4

133.9

74.9

35.9

1875.6


113.2

103.0

85.6

00.0

1203.6

Clubfoot 36414.9

3510.3

3610.9

149.7

35.9

45513.7


61.8

72.1

00.0

12.0

692.1


10.3

41.2

00.0

00.0

180.5


30.9

41.2

00.0

00.0

270.8


20.6

10.3

21.4

24.0

240.7


00.0

00.0

00.0

12.0

30.1


61.8

82.4

10.7

12.0

652.0


30.9

61.8

00.0

00.0

290.9


00.0

20.6

10.7

12.0

110.3

Encephalocele 90.4

00.0

10.3

10.7

00.0

120.4


451.8

30.9

41.2

10.7

00.0

531.6


82.3

92.7

21.4

00.0

732.2


123.5

41.2

00.0

12.0

611.8


12572.8

6337.4

1419.1

1038.7

114367.4


10.3

00.0

21.4

00.0

110.3


92.6

123.6

42.8

24.0

1083.3

Omphalocele 150.6

20.6

20.6

21.4

00.0

210.6



WisconsinBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







175.0

144.2

64.2

47.9

1163.5


00.0

20.6

21.4

00.0

100.3


41.2

123.6

42.8

00.0

983.0


61.8

103.0

32.1

00.0

1223.7


00.0

00.0

00.0

00.0

20.1


113.2

123.6

32.1

59.9

972.9


113.2

103.0

21.4

24.0

993.0


164.7

123.6

53.5

12.0

942.8


50.2

10.3

10.3

00.0

00.0

70.2


41.2

103.0

00.0

24.0

702.1


321.3

20.6

41.2

00.0

24.0

421.3


00.0

20.6

21.4

00.0

180.5


00.0

20.6

21.4

00.0

180.5

Trisomy 13 170.7

30.9

30.9

10.7

00.0

240.7

Trisomy 18 431.8

61.8

51.5

21.4

00.0

652.0


277.9

6118.4

2819.5

35.9

41012.4


41.2

20.6

00.0

00.0

140.4


6519.1

11233.8

3322.9

1733.6

83725.2

1


34062.

33143.

14387.

5063.

331659.


17170.

16867.

7319.

2586.

169640.




WisconsinTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)WisconsinTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



0.5102.4

240.7

Trisomy 18 361.2

296.9

652.0


19145.4

41012.4


42045.

331659.


Notes1.No data on whether probable cases included or not.

General comments-Cannot distinguish between gastroschisis and omphalocele.-Fetal Deaths are those that are greater than or equal to 20 weeks.-No data available for terminations.-Other/Unknown total live births and total male live births include multi-racial.



icw6

Highlight

Department of DefenseBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)Department of DefenseBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 260.7

50.6

30.5

20.8

00.0

360.6

1


202.5

132.0

72.6

21.9

981.7


111.3

203.0

114.2

43.8

1212.1


212.6

162.4

62.3

65.7

1923.3


80398.5

60692.1

20075.7

8277.9

536791.2

2


2396.1

668.1

385.8

103.8

43.8

3636.2

3


91.1

91.4

20.8

10.9

581.0


20.2

10.2

10.4

00.0

270.5


182.2

152.3

41.5

21.9

1402.4


303.7

365.5

249.1

87.6

4207.1


465.6

456.8

228.3

87.6

4728.0


678.2

649.7

2710.2

76.6

65311.1


739.0

477.1

207.6

109.5

4798.1

Clubfoot 87622.4

15719.2

13821.0

3212.1

2422.8

125721.4


759.2

426.4

155.7

1211.4

5098.7


151.8

101.5

62.3

21.9

1302.2


354.3

345.2

62.3

21.9

1983.4


151.8

91.4

51.9

32.8

1071.8


91.1

60.9

20.8

10.9

460.8


253.1

253.8

83.0

32.8

2263.8


253.1

274.1

114.2

32.8

2023.4


70.9

81.2

31.1

32.8

691.2

Encephalocele 381.0

131.6

101.5

31.1

32.8

681.2


1213.1

232.8

132.0

62.3

21.9

1672.8


556.7

416.2

145.3

87.6

3886.6


415.0

243.6

83.0

65.7

2574.4


38292.2

26679.4

12692.2

5296.6

3096102.4


121.5

20.3

51.9

10.9

621.1


506.1

395.9

103.8

65.7

3325.6


20825.5

13320.2

4416.6

1716.1

114419.4



Department of DefenseBirth Defects Counts and Prevalence 2007 - 2011 (Prevalence per 10,000 Live Births)







293.6

182.7

103.8

21.9

1642.8


364.4

294.4

2911.0

43.8

3656.2


384.7

436.5

134.9

54.7

3546.0


334.0

182.7

31.1

54.7

1692.9


678.2

426.4

166.1

43.8

3636.2


293.6

314.7

93.4

109.5

2844.8

1


577.0

436.5

3011.4

54.7

3786.4


531.4

172.1

152.3

41.5

00.0

931.6


374.5

365.5

155.7

32.8

3245.5


1483.8

212.6

192.9

114.2

10.9

2043.5


192.3

50.8

51.9

10.9

931.6


192.3

50.8

51.9

10.9

931.6

Trisomy 13 401.0

202.5

111.7

20.8

00.0

741.3

1

Trisomy 18 651.7

101.2

192.9

31.1

00.0

991.7

1


11213.7

10015.2

3212.1

109.5

84614.4

1


60.7

101.5

20.8

10.9

811.4


52564.4

47171.6

15859.8

7369.3

421671.7

4


81563.

65818.

26431.

10528.

588403.


41417.

33517.

13671.

5385.

302437.




Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2007 - 2011 (Prevalence per 10,000 Live Births)



1.1163.0

741.3

1

Trisomy 18 601.2

346.5

991.7

1


29455.8

84614.4

1


52675.

588403.


Notes1.Department of Defense (DoD) Registry only captures livebirths.2.DoD Registry relies on ICD-9-CM codes and cannot differentiate Patent Foramen Ovale (PFO).3.DoD Registry relies on ICD-9-CM codes and cannot distinguish 745.487.4.All ICD-9-CM coded cases that meet DoD Registry case criteria are included. DoD Registry relies on ICD-9-CM codes and cannot distinguish745.487.

General comments-Criteria for a case: One diagnosis from institutional records, or 2 diagnoses from professional encounter records.-Infants that appear as multiples of same gender are excluded from analysis.-Race/Ethnicity for the DoD Birth and Infant Health Registry is based on the military parent through whom the infant receives military health carebenefits. This may be the infants' mother or father.



STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY

Updated August 2014

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Acknowledgement: State birth defects program directors provided the information for the directory. Their names can be found under the 'contact' section of each state profile.



Alabama

Program status: No surveillance program Contacts Cindy Ashley, BSN, RN Alabama Newborn Screening Program 201 Monroe Street Montgomery, Alabama 36104 Phone: 334-206-2971 Fax: 334-206-3791 E-mail: [email protected] Rachel Montgomery, BSN, RN Alabama Newborn Screening Program 201 Monroe Street Montgomery, Alabama 36104 Phone: 334-206-5955 Fax: 334-206-3063 E-mail: [email protected]



Alaska

Alaska Birth Defects Registry (ABDR)

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1996 Earliest year of available data: 1996 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health) Population covered annually: 11,000 Statewide: Yes Current legislation or rule: 7 AAC 27.012 Legislation year enacted: 1996

Case Definition Outcomes covered: 237.7-237.72 243 255.2 270.0-270.9 271.0-271.1 277.0-277.9 279.0-279.9 282.0-282.9 284 331.3-331.9 334.0-334.9 335.0-335.9 343.0-343.9 359.0-359.9 362.74 389.0-389.9 740.0-740.2 741.0-741.9 742.0-742.9 743.0-743.9 744.0-744.9 745.0-745.9 746.0-746.9 747.0-747.9 748.0-748.9 749.0-749.25 750.0-750.9 751.0-751.9 752.0-752.9 753.0-753.9 754.0-754.89 755.0-755.9 756.0-756.9 757.0-757.9 758.0-758.9 759.0-759.9 760.0-760.9 760.71 Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Birth to sixth birthday Residence: In and out of state births to Alaska residents

Surveillance Methods Case ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Genetics clinics, specialty clinics (heart, cleft lip/palate, neurodevelopmental), MIMR (FIMR), public health nursing Delivery Hospitals: Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Pediatric & tertiary care hospitals: Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Third party payers: Medicaid databases, Indian health services Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Anencephaly (ANC) - 740.0 only Spina Bifida Aperta (SBA)- 741-741.93 Encephalocele (ENC) - 742.0 only Cleft Lip (CL) - 749.1-749.14 Cleft Palate (CP) - 749.0-749.04 Cleft Palate and Lip (CPL) 749.20-749.25 Hirschsprung's disease (HSP) - 751.3 Hypospadias (HYP) - 752.61 Epispadias (EPI) - 752.62 Obstructive Genitourinary Defect (OGU) - 753.2-753.6 Spina Bifida Occulta (SBO) 756.17 Omphalocele (OMP) - 756.70, 756.72 Gastroschisis (GAS) - 756.710, 756.73, 756.79 Trisomy 21 (Down syndrome DWN) 758.0

Trisomy 13 (Patau Syndrome PAT) - 758.1 Trisomy 18 (Edwards syndrome EDW) - 758.2 Fetal Alcohol Syndrome (FAS) - 760.71 Coding: ICD-9-CM, ICD-10-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS, Access, R Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file System integration: No

Funding Funding source: 20% General state funds, 80% MCH funds Other Web site:http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/abdr/default.aspx Surveillance reports on file: Http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/mchdatabook/default.aspx Contacts Kit Coleman, BS State of Alaska, Division of Public Health 3601 C Street, Suite 358 Anchorage, AK 99503 Phone: 907-269-8097 Fax: 907-269-3493 E-mail: [email protected]



Arizona

Arizona Birth Defects Monitoring Program (ABDMP)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1986 Earliest year of available data: 1986 Organizational location: Department of Health (Public Health Statistics) Population covered annually: 85,132 Statewide: Yes Current legislation or rule: Legislation enacted 1988; Rule effective 1991 Statute: 36-133; Rule: Arizona Administrative Code R9-4-Article 5 Legislation year enacted: 1988

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Any gestational age or weight if a fetal death certificate was issued) Age: Up to one year after delivery. If the nature of a defect diagnosed in the first year of life is more precisely diagnosed later in the child's life, and this information is contained in the chart at the time of our review, then the more precise diagnosis Residence: Arizona birth to an Arizona resident mother

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Fetal death certificates, Hospital Discharge Database Delivery Hospitals: Disease index or discharge index Other sources: Midwifery facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity,

Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database collection and storage: Access, Oracle

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link case finding data to final birth file

Funding Funding source: 14.3% General state funds, 14.7% MCH funds, 71% CDC grant Web site: http://azdhs.gov/phs/phstats/bdr/index.htm Surveillance reports on file: Annual Reports Additional information on file: Fact Sheets; Resources Contacts Timothy J. Flood, M.D. Arizona Department of Health Services 150 North 18th Avenue, Suite 550 Phoenix, AZ 85007 Phone: 602-542-7331 Fax: 602-364-0082 E-mail: [email protected] Dianna Contreras Arizona Department of Health Services 150 North 18th Avenue, Suite 550 Phoenix, AZ 85007 Phone: 602-542-7335 Fax: 602-542-7447 E-mail: [email protected]



Arkansas

Arkansas Reproductive Health Monitoring System (ARHMS)

Purpose: Surveillance, Research, Prevention actvities Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Legislators Program status: Currently collecting data Start Year: 1980 Earliest year of available data: 1980 Organizational location: University, Pediatric hospital Population covered annually: 40,000 Statewide: Yes Current legislation or rule: Senate Bill Act 214, 1985 Legislation year enacted: 1985

Case Definition Outcomes covered: Full range of structural malformations, syndromes, genetic diseases, other pregnancy outcomes Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 2 years old Residence: In and out of state births to Arkansas residents

Surveillance Methods Case ascertainment: Active Case Finding Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All prenatal diagnosed or suspected cases Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal diagnostic information

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS, Access, Stata Quality assurance: Validity checks, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: No

Funding Funding source: 100% General state funds Web site: http://birthdefects.uams.edu/ Contacts Bridget Mosley, MPH Arkansas Reproductive Health Monitoring System Arkansas Children's Hospital Research Institute 13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-8951 Fax: 501-364-5107 E-mail: [email protected] Charlotte Hobbs, MD, PhD Arkansas Reproductive Health Monitoring System Arkansas Children's Hospital Research Institute 13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-5000 Fax: 501-364-5107 E-mail: [email protected]



California

California Birth Defects Monitoring Program (CBDMP)

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Universities Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1983 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 70,000 Statewide: No, CBDMP currently monitors a sampling of California births that are demographically similar to the state as a whole and whose birth defects rates and trends have been reflective of those throughout California. Furthermore, CBDMP has statutory authority to conduct active surveillance anywhere in the state when warranted by environmental incidents or concerns. Current legislation or rule: California Health and Safety Code, Division 102, Part 2, Chapter 1, Sections 103825-103855, effective 1982, recodified 1996 Legislation year enacted: 1982

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: One year Residence: In-state births to residence of counties monitored by CBDMP

Surveillance Methods Case ascertainment: Active Case Finding Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codable defect Coding: CDC BPA codes but modified for use in California Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: SQL server

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Validity checks are done on all abstracts Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness

System integration System links: Link case finding data to final birth file, Hospital discharge. CBDMP links case finding data to final vital statistics fetal death files

Funding Funding source: 100% CBDMP Special Fund Web site: www.cdph.ca.gov/programs/CBDMP Surveillance reports on file: Birth defect fact sheets and California regional birth defect data available on the website. Additional information on file: Please send inquiries to [email protected] Contacts Barbara Warmerdam California Birth Defects Monitoring Program/Maternal, Child and Adolescent Health Program California Department of Public Health 1615 Capitol Avenue Sacramento, CA 95814 Phone: 916-341-6677 Fax: 916-341-6499 E-mail: [email protected] Addie Aguirre Maternal, Child and Adolescent Health Program California Department of Public Health 1615 Capitol Avenue Sacramento, CA 95814 Phone: 916-650-0300 Fax: 916-650-0305 E-mail: [email protected]



Colorado

Colorado Responds to Children with Special Needs Section (CRCSN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1988 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 65,004 (2013) Statewide: Yes Current legislation or rule: Colorado Revised Statutes (CRS) 25-1.5-101.25-1.5-105 Legislation year enacted: 1985

Case Definition Outcomes covered: Structural birth defects, fetal alcohol syndrome, selected genetic and metabolic disorders; muscular dystrophy; selected developmental disabilities; very low birth weight (less than 1500 grams); others with medical risk factors for developmental delay. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages, 20 weeks gestation) Age: Up to the 5th birthday (up to 10th birthday for fetal alcohol syndrome) Residence: Events occurring in-state- or out-of-state Colorado residents

Surveillance Methods Case ascertainment: Active Case Finding, Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Selected stillborn infants, Selected chart reviews for prenatal to age 3: for statistical trends monitoring (23 conditions-catagories); fetal alcohol syndrome ( to age 10), active case ascertainment data sources Coding: ICD-9-CM, Extended code utilized to describe syndromes, further detail of a condition and to specify status.

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Gravidity/parity, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), 99% of data are collected in electronic format

Data Analysis Data analysis software: Epi-Info, SAS, Access, Arcview (GIS software); Maptitude, SaTScan, Centrus Quality assurance: Re-abstraction of cases, Comparison/verification between multiple data sources, Clinical review, Timeliness, Records linkage and de-duplication Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Environmental Studies

System integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases

Funding Funding source: 26% General state funds, 30% Service fees, 43% CDC grant Other Web site: http://www.cdphe.state.co.us Contacts Margaret Frances Ruttenber, MSPH Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2636 Fax: 303-782-0904 E-mail: [email protected] Carol Stanton, MBA Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2621 Fax: 303-782-0904 E-mail: [email protected]



Connecticut

Connecticut Birth Defects Registry (CT BDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Reporting for MCH Block Grant Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2002 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 37,000 Statewide: Yes Current legislation or rule: Sec. 19a-53. (Formerly Sec. 19-21). Reports of physical defects of children. Sec. 19a-54. (Formerly Sec. 19-21a). Registration of physically handicapped children. Sec. 19a-56a birth defects data. (Formerly Sec. 10a-132b). Birth defects surveillance program. Case Definition Outcomes covered: All major structural birth defects; biochemical, genetic and hearing impairment through linkage with Newborn Screening System; any condition which places a child at risk for needing specialized medical care (i.e., complications of prematurity, cancer, trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71 Pregnancy outcome: Livebirths (All gestational ages and birth weights, PDA = to 2500 grams birth weight) Age: Up to one year after delivery for birth defects, but reported up to age 5 Residence: In state births to state residents

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, inpatient hospitalizations and emergency room visits Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Developmental Disabilities Surveillance Delivery Hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in newborn nurseries and NICUs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in pediatric inpatient and outpatient services planned for future Other sources: Midwifery facilities, Physician reports, Mandatory reporting by health care providers and facilities; CYSHCN Programs; Newborn Screening System (for genetic disorders and hearing impairment). Case Ascertainment Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Oracle

Data Analysis Data analysis software: SAS, Access, Arc GIS Quality assurance: Validity checks, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Provider education


Funding Funding source: 100% General state funds Other Web site: http://www.ct.gov/dph/birthdefectsregistry Surveillance reports on file: NBDPN annual reports, state profiles Contacts Karin C Davis, BS Public Health Connecticut Department of Public Health, Family Health Section 410 Capitol Avenue, MS #11MAT Hartford, CT 6134 Phone: (860) 509-7499 Fax: (860) 509-7720 E-mail: [email protected]



Delaware

Delaware Birth Defects Registry (DBDR)

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Early Childhood Prevention Programs, Birthing Centers Program status: Currently collecting data Start Year: 2007 Earliest year of available data: 2007 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 12,000 Statewide: Yes Current legislation or rule: House Bill No. 197, an act to amend Title 16 of the Delaware Code relating to Birth Defects Legislation year enacted: 1997

Case Definition Outcomes covered: Selected major birth defects, selected metabolic defects, genetic diseases, and infant morality. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or greater than 350 grams.) Age: Birth to 5 years Residence: In-state and out-of-state birth to state resident, and in-state birth to state non-resident

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Developmental Disabilities Surveillance, Cancer registry, AIDS/HIV registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, Specialty outpatient clinics, High risk pregnancy logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Midwifery facilities, Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Natus Medical, Inc.

Data Analysis Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Capture-recapture analyses, Epidemiologic studies (using only program data), Education/public awareness

System integration System links: Link to other state registries/databases, Link to Newborn Bloodspot and Hearing Screening. System integration: Initial check into Newborn Bloodspot Screening records with a link which pulls info to Birth Defects Registry from Newborn Bloodspot Screening case management system.

Funding Funding source: 40% General state funds, 60% MCH funds Other Web site: http://dhss.delaware.gov/dhss/dph/chca/dphbdr1.html Surveillance reports on file: Analysis of the 2007 Delaware Birth Defects Registry http://dhss.delaware.gov/dhss/dph/chca/files/birthdefectsregistryreport2007.pdf Contacts Dana R Thompson, MPH Christiana Care Health System 4735 Ogletown Stanton Road Newark, DE 19718 Phone: 302-733-5032 Fax: 302-733-5044 E-mail: [email protected]

Coding: CDC coding system based on BPA, ICD-9-CM



District of Columbia

District Of Columbia Birth Defects Surveillance And Prevention Program (DC BDSPP)

Program status: Interested in developing a surveillance program Contacts Karen Watts, BSN, MPA, MBA, RNC, FAHM, PMP Department of Health, Community Health Administration 899 North Capitol Street, NE 3rd Floor Washington, DC 20002 Phone: 202-442-9405 Fax: 202-671-0849 E-mail: [email protected] Sandra A Davis, MPH Department of Health, Community Health Administration 899 North Capitol Street, NE 3rd Floor Washington, DC 20002 Phone: 2024785820 Fax: 2026710854 E-mail: [email protected]



Florida

Florida Birth Defects Registry (FBDR)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Services, Educate health care professionals, women of childbearing age and general public about birth defects. Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators, Federal and state agencies Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Epidemiology), University Population covered annually: 211,228 in 2012 Statewide: Yes Current legislation or rule: Section 381.0031(1,2) F.S., allows for development of a list of reportable conditions. Birth defects were added to the list in July 1999. Legislation year enacted: 1999

Case Definition Outcomes covered: Major structural malformations and genetic disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Until age 1 Residence: Florida

Surveillance Methods Case ascertainment: Passive case-ascertainment, population based, FL has two CDC funded cooperative agreements which use active case ascertainment which is linked to the passive surveillance program. Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc)

Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Dedicated server for birth defects data.

Data Analysis Data analysis software: SAS, Access, SQL, dBASE Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases, Maternal linked file. System integration: The department has created a maternally linked file beginning with 1998. The birth defects data has been included in this linked file. Birth defects data are displayed on the department's Environmental Public Health Tracking Program site.

Funding Funding source: 62% General state funds, 34% CDC grant, 4% Private Foundation Web site: www.fbdr.org Surveillance reports on file: Publications, procedure manauals, electronic case ascertaintment dababase and educational materials Comments: CDC/NCBDDD Cooperative Agreement for enhanced surveillance of selected birth defects, referral for services and prevention activities. CDC/NCEH Cooperative Agreement for Environmental Public Health Tracking for active surveillance of selected birth defects and analysis of environmental data and birth defects. Contacts Jane A. Correia, B.S. Florida Department of Health 4052 Bald Cypress Way, Bin A12 Tallahassee, FL 32399-1712 Phone: 850-245-4444, ext. 2198 Fax: 850-922-8473 E-mail: [email protected] Suzanne R. Anjohrin, MPH Florida Department of Health 4052 Bald Cypress Way, Bin A12 Tallahassee, FL 32399-1712 Phone: 850-245-4444 ext. 4572 Fax: 850-922-8473 E-mail: [email protected]



Georgia

Georgia Birth Defects Reporting And Information System (GBDRIS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2003 Earliest year of available data: 2005 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 138,000 Statewide: Yes Current legislation or rule: Birth defects are reportable under State Laws Official Code of Georgia Annotated (OCGA) 31-12-2 and 31-1-3.2 which mandate the reporting of notifiable diseases and newborn hearing screening, and Chapters 290-5-3-.02 and 290-5-24 of the Rules of Department of Human Resources, which regulate the reporting of notifiable diseases and metabolic disorders. Legislation year enacted: updated in 2003

Case Definition Outcomes covered: Major birth defects, genetic diseases, FAS and CP Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to 18 years of age Residence: In and out of state births to state residents

Surveillance Methods Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Public health program evaluation, Service delivery

System integration System integration: We are working to integrate it with our child health data system that contains birth, genetics and intervention referrals.

Funding Funding source: 100% MCH funds Other Web site: http://health.state.ga.us/epi/mch/birthdefects/gbdris/index.asp Additional information on file: In Georgia, please note that other surveillance is performed by MACDP and that is where the numbers for your report come from. Contacts Todd Griffin, MS, MSPH GA Division of Public Health, MCH Section 2 Peachtree St., NW, Suite 11-463 Atlanta, GA 30303 Phone: 404-463-2191 Fax: 404-657-2910 E-mail: [email protected]



Georgia

Metropolitan Atlanta Congenital Defects Program (MACDP)

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Laboratories, Prenatal Diagnostic Providers Program status: Currently collecting data Start Year: 1967 Earliest year of available data: 1968 Organizational location: CDC, National Center on Birth Defects and Developmental Disabilities Population covered annually: 35,000 Statewide: No, births to mothers residing within one of three central counties in the metropolitan Atlanta area of the state of Georgia Case Definition Outcomes covered: All major structural and genetic birth defects Pregnancy outcome: Livebirths (≥20 weeks), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Before 6 years of age Residence: Births to mothers residing in one of three central metropolitan Atlanta counties

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Induction logs and miscarriage logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation (Birth weight < 2500 grams and/or 20-36 weeks gestation), All stillborn infants, All neonatal deaths, All elective abortions, All infants with low APGAR scores, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access, SQL Server, SAS

Data Analysis Data analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Education/public awareness, Prevention projects, Survival analysis

System integration System links: Link case finding data to final birth file, National Death Index; Death and Fetal Death Records; Laboratory Records

Funding Funding source: 100% Intramural CDC funding Web site: http://www.cdc.gov/ncbddd/bd/macdp.htm Surveillance reports on file: MACDP 40th Anniversary Surveillance Report Additional information on file: CDC/BPA Defect Code; Including prenatal diagnoses in BD monitoring

Comments: The 40th Anniversary Surveillance Report was published: Correa A, Cragan JD, Kucik JE, et al. Reporting birth defects surveillance data 1968-2003. Birth Defects Research Part A. 2007;79(2):65-186. Contacts Janet D. Cragan, MD, MPH Centers for Disease Control and Prevention 1600 Clifton Rd., MS E-86 Atlanta, GA 30333 Phone: 404-498-3807 Fax: 404-498-3040 E-mail: [email protected] Pamela Costa, MA Centers for Disease Control and Prevention 1600 Clifton Rd., MS E-86 Atlanta, GA 30333 Phone: 404-498-3488 Fax: 404-498-3040 E-mail: [email protected]



Hawaii

Hawaii Birth Defects Program (HBDP)

Purpose: Surveillance Partner: Hospitals, Iowa Registry for Congenital and Inherited Disorders Program status: Currently collecting data Start Year: 1988 Earliest year of available data: 1986 Organizational location: Department of Health (Children with Special Health Needs Branch) Population covered annually: 19,000 Statewide: Yes Current legislation or rule: Hawaii Revised Statutes - sec. 321-421 through 426 Hawaii Revised Statutes - sec. 324-41 through 44 Legislation year enacted: 2002

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to one year after delivery Residence: All in-state births

Surveillance Methods Case ascertainment: Active Case Finding Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history


Data Analysis Data analysis software: SAS Quality assurance: Re-abstraction of cases, Double-checking of assigned codes, Clinical review Funding Funding source: 100% State of Hawaii Birth Defects Special Fund Web site: http://health.hawaii.gov/genetics/programs/hbdhome/ Contacts Jonathan B. Kimura, MSCP Hawaii Birth Defects Program, Hawaii State Department of Health 741 Sunset Avenue Honolulu, Hawaii 96816 Phone: 808-733-9065 Fax: 808-733-9068 E-mail: [email protected] Sylvia Mann, MS, CGC Genomics Section, Hawaii State Department of Health 741 Sunset Avenue Honolulu, Hawaii 96816 Phone: 808-733-9063 Fax: 808-733-9068 E-mail: [email protected]



Idaho

Program status: No surveillance program Contacts Pam Harder Idaho Dept of Health & Welfare 450 West State Street Boise, ID 83720 Phone: 208 334-6658 Fax: 208-334-4946 E-mail: [email protected] Jacquie Watson Childrens Special Health Program Idaho Department of Health and Welfare 450 West State Street Boise, ID 83720 Phone: 208-334-5963 Fax: 208-334-4946 E-mail: [email protected]



Illinois

Adverse Pregnancy Outcomes Reporting System (APORS)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Community Nursing Services, Early Childhood Prevention Programs, Genetic Clinics, Drug-testing laboratories, Illinois Department of Human Services, Illinois Department of Health and Family Services, Illinois Department of Children and Family Services, Illinois Newborn Metabolic Screening Program Program status: Currently collecting data Start Year: 1986 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment) Statewide: Yes Current legislation or rule: Illinois Health and Hazardous Substances Registry Act (410 ILCS 525/) 77 Illinois Administrative Code 840 Legislation year enacted: 1984; last amended 2008

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or the family chose to hold a funeral) Age: 2 years Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Passive case-finding with case confirmation, Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Reporting from all hospital nurseries Pediatric & tertiary care hospitals: Reporting from all hospital nurseries Other specialty facilities: Genetic counseling/clinic genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All prenatal diagnosed or suspected cases, APORS collects and refers cases of neonatal deaths, infants with gestational age less than 31 weeks, infants with prenatal drug exposure (excluding marijuana), serious congenital infections, endocrine, metabolic and immune disorders, hemoglobinopathies, coagulation defects, leukemia, intrauterine growth restriction, seizures, conditions leading to more than 72 hours on a ventilator, and selected other conditions. Only charts with reported selected birth defects are reviewed. Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-10-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Purpose-built system linked with Vital Record System

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Education/public awareness

System integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: Cases are collected in a database that is a module of the Vital Record reporting system. Cases may be initiated from the birth certificate, by hospital staff or by APORS staff. Local community health agencies have access to cases in their jurisdiction for provision of case-management services. APORS cases are also included in the Illinois Healthcare and Family Services Enterprise Data Warehouse where they are available to Illinois' Department of Human Services, Department of Children and Family Services, and Department of Healthcare and Family Services staffs.

Funding Funding source: 66% General state funds, 29% CDC grant, 5% Other federal funding (non-CDC grants) Web site: http://www.idph.state.il.us/about/epi/apors.htm Surveillance reports on file: Birth Defects and Other Adverse Pregnancy Outcomes in Illinois 2005-2009 Trends in the Prevalence of Birth Defects in Illinois and Chicago 1989-2009 Additional information on file: QC reports, fact sheets Contacts Jane E. Fornoff, MA, MSC, DPhil Illinois Department of Public Health 535 W Jefferson St, Fl 3 Springfield, IL 62761 Phone: 217-785-7133 Fax: 217-524-1770 E-mail: [email protected] Teifu Shen, MD, PhD Illinois Department of Public Health 535 W Jefferson St, Fl 3 Springfield, IL 62761 Phone: 217-785-1873 Fax: 217-524-1770 E-mail: [email protected]



Indiana

Indiana Birth Defects & Problems Registry (IBDPR)

Purpose: Surveillance, Research, Referral to Services Partner: Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2002 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health, State Health Data Center) Population covered annually: 85,000 Statewide: Yes Current legislation or rule: IC 16-38-4-7 Rule 410 IAC 21-3 Legislation year enacted: 2001

Case Definition Outcomes covered: ICD-9-CM Codes 740-759.9, Fetal Alcohol Spectrum Disorder (760.71), Pervasive Developmental Disorder (299.0), fetal deaths, metabolic disorders & hearing loss from newborn screening, selected neoplasms, congenital blood disorders, and certain eye disorders. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 5 years (FAS); all individuals with Autism Spectrum Disorders; up to 3 years for all other birth defects Residence: In- and out-of-state (as reported to IBDPR) births to state residents

Surveillance Methods Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Chart audits of 45 targeted birth defects Pediatric & tertiary care hospitals: Disease index or discharge index, Chart audits of 45 targeted birth defects Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759 Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: ICD-9-CM and BPA


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), ISDH Chart Auditors submit hospital chart audit information electronically through use of a laptop and a web-based portal to the Indiana State Department of Health Repository, which stores and integrates the data. Database collection and storage: Oracle

Data Analysis Data analysis software: SAS, Oracle and ArcView GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Needs assessment

System integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: The database is linked with birth, death, newborn hearing screening, and newborn metabolic and pulse oximetry screening data. Other Web site: www.birthdefects.in.gov Contacts Holly Heindselman, MPH Indiana State Department of Health 2 North Meridian Street, 2E Indianapolis, IN 46204 Phone: 317-233-1231 Fax: 317-234-2995 E-mail: [email protected] Robert Bowman, MS, MA Indiana State Department of Health 2 North Meridian Street, 2E Indianapolis, IN 46204 Phone: 317-233-1252 Fax: 317-234-2995 E-mail: [email protected]



Iowa

Iowa Registry for Congenital and Inherited Disorders (IRCID)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Prevention education programs Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Legislators Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1983 Organizational location: University Population covered annually: 39,487 average live births per year (2007-2011) Statewide: Yes Current legislation or rule: Iowa Code 136A, Iowa Administrative Code 641-4.7 Legislation year enacted: 1986; Revised 2001, 2003, 2004, 2009, 2013

Case Definition Outcomes covered: Major birth defects, muscular dystrophy, fetal deaths with and without birth defects, newborn screening disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 2 years Residence: Maternal residence in Iowa at time of delivery

Surveillance Methods Case ascertainment: Active case-finding Vital Records: Birth certificates, Death certificates, Fetal death certificates, Fetal Death Evaluation Protocol Other state based registries: Programs for children with special needs, Developmental Disabilities Surveillance, Cancer registry, AIDS/HIV registry, Iowa Perinatal Care Program Delivery Hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Physician reports, Outpatient surgery facilities; IHA Discharge Data

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Developmental delay,

CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access, Oracle, PC Server

Data Analysis Data analysis software: SPSS, SAS, Access, Oracle Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file, Link to environmental databases System integration: For specific studies, data may be linked with environmental databases or other state databases.

Funding Funding source: 69% General state funds, 31% CDC grant Other Web site: http://www.public-health.uiowa.edu/ircid/ Contacts Paul A. Romitti, Ph.D. Iowa Registry for Congenital and Inherited Disorders UI Research Park 100 BVC Rm W245G Iowa City, IA 52242-5000 Phone: 319-384-1549 Fax: 319-353-4095 E-mail: [email protected]



Kansas

Kansas Birth Defects Information System (BDIS)

Purpose: Surveillance Partner: Hospitals, Environmental Agencies/Organizations, Universities Program status: Interested in developing a surveillance program Start Year: 1985 Earliest year of available data: 1985 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health, Vital Statistics) Population covered annually: 40,304 Statewide: Yes Current legislation or rule: K.S.A. 65-1,241 through 65-1,246 Legislation year enacted: 2004

Case Definition Outcomes covered: The outcome data below are available from Office of Vital Statistics. Live births and stillbirths (fetal deaths) information are used as part of the Birth Defects Information System (BDIS). Thirteen anomalies (and "other" congenital anomalies) are listed on the birth certificate and are reported, however, these are not linked to ICD-9 codes. In addition to major birth defects, low birth weight (<=1,200 grams), low Apgar scores (<=5 at five minutes), seizure or serious neurologic dysfunction, and significant birth injury [skeletal fracture(s), peripheral nerve injury, and/or soft tissue/solid organ hemorrhage which requires intervention] are also reported to BDIS. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (gestational age – not less than 20 completed weeks) Age: Under five years of age with a primary diagnosis of a congenital anomaly or abnormal condition Residence: In state and out of state births to Kansas residents and in-state births to out of state residents

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Reports Pediatric & tertiary care hospitals: Reports Other sources: Physician reports Case Ascertainment Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Family history

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), In Kansas, birth defects (congenital anomalies) are collected through three data sources: live birth certificates, stillbirth (fetal death) certificates, and the congenital malformations and fetal alcohol syndrome reporting form. The live birth and stillbirth (fetal death) certificates data (congenital anomalies and abnormal conditions) contained within the Vital Statistics Integrated Information System are extracted, downloaded and transferred to BDIS. Any additional reports of congenital anomalies from physicians, hospitals and freestanding birthing centers are entered manually into BDIS. Database collection and storage: Access, SQL Server

Data Analysis Data analysis software: SAS Quality assurance: Office of Vital Statistics conducts verification on live birth and stillbirth (fetal death) certificate data. Data use and analysis: Baseline rates, Rates by demographic and other variables, Time trends, Grant proposals, Ad-hoc upon request (e.g. cluster investigations)

System integration System links: Link to other state registries/databases System integration: Our program has a link with vital statistics records. BDIS uses the same data system (WebBFH) and shares information with Children and Youth with Special Health Care Needs and Newborn metabolic screening program.

Funding Funding source: 100% MCH funds Other Web site: http://www.kdheks.gov/bfh/birth_defects.htm Contacts Jamie S. Kim, MPH Kansas Department of Health and Environment 1000 SW Jackson, Suite 220 Topeka, Kansas 66612-1274 Phone: 785-296-6467 Fax: 785-296-6553 E-mail: [email protected] Jamey D. Kendall, BSN Kansas Department of Health and Environment 1000 SW Jackson, Suite 220 Topeka, Kansas 66612-1274 Phone: 785-291-3363 Fax: 785-296-6553 E-mail: [email protected]



Kentucky

Kentucky Birth Surveillance Registry (KBSR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Genetic Clinics, Laboratories Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 54,000 Statewide: Yes Current legislation or rule: Kentucky Revised Statute 211.660 Kentucky birth surveillance registry - Department's authority to promulgate administrative regulations. Effective July 15, 2002 Legislation year enacted: 2002

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 5 years of age Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding, Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Newborn CCHD Screening Delivery Hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts Pediatric & tertiary care hospitals: Discharge summaries Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Coding: ICD-9-CM



Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Service delivery, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file System integration: Birth records from vitals statistics are linked with all cases in the KBSR database. Web site: http://chfs.ky.gov/dph/mch/ecd/kbsr.htm Surveillance reports on file: Birth Defect Specific Fact Sheets; Contact of Partners Contacts Monica L Clouse, MPH Kentucky Department for Public Health 275 E Main St Frankfort, KY 40601 Phone: 502-564-4830 E-mail: [email protected]



Louisiana

LA Birth Defects Monitoring Network (LBDMN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2005 Earliest year of available data: 2005 Organizational location: Department of Health (DHH/OPH/CPH/Title V CYSHCN Programs) Population covered annually: 62,000 Statewide: Yes Current legislation or rule: Law: LA R.S. 40:31.41 - 40:31.48, 2001. DHH Rule: LAC 48:V. Chapters 161 and 163 Legislation year enacted: 2001

Case Definition Outcomes covered: Major structural birth defects and selected genetic conditions Pregnancy outcome: Livebirths (greater than or equal to 20 weeks gestation or greater than or equal to 350 grams) Age: Up to three years old Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding, Combination of active and passive case ascertainment, population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Delivery Hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Third party payers: Medicaid databases

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759 Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM


Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access, InfoPath/SharePoint stored in SQL

Data Analysis Data analysis software: SAS, Access, GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file, Link case finding data to final death file System integration: Integration with Louisiana Electronic Event Registration System (LEERS) birth and death records will be completed in 2014.

Funding Funding source: 24% General state funds, 47% MCH funds, 25% CDC grant, 4% Inter Agency Transfer Web site: www.dhh.la.gov/lbdmn Surveillance reports on file: Louisiana Morbidity Report, May-June 2009, Vol 20, No 3; Results from 2006-2008 Birth Defects Surveillance System; 2013 Annual NBDPN Data Report; Presentations of analysis using 2006-2008 data concerning ASD Reporting; Cleft Lip/Palate and Hearing Loss; and Age and Racial Disparities Additional information on file: Advisory Board Documentation http://wwwprd.doa.louisiana.gov/boardsandcommissions/viewBoard.cfm?board=192 Contacts Dionka C Pierce, MPH DHH/OPH/CSHS/LBDMN 1450 Poydras St., Ste 1950 New Orleans, LA 70112 Phone: 504-568-5629 Fax: 504-568-7529 E-mail: [email protected] Julie A Johnston, BS DHH/OPH/ LBDMN 7173-A Florida Blvd. Baton Rouge, LA 70806 Phone: 225-925-7222 Fax: 225-925-7245 E-mail: [email protected]



Maine

Maine CDC Birth Defects Program (MBDP)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Education Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, March of Dimes, other New England birth defects programs Program status: Currently collecting data Start Year: 1999 Earliest year of available data: 2003 Organizational location: Department of Health (Division of Population Health/Maternal and Child Health Unit/CSHN) Population covered annually: 12,593 Statewide: Yes Current legislation or rule: 22 MRSA c. 1687 Legislation year enacted: 1999

Case Definition Outcomes covered: Selected major birth defects: NTD, clefts, gastroschisis, omphalocele, trisomy 21, reduction deformities of upper and lower limb, hypospadias and major heart defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Prenatally diagnosed at any gestation), Elective terminations (Prenatally diagnosed at any gestation) Age: Through age one Residence: All in-state births to Maine residents

Surveillance Methods Case ascertainment: Passive case ascertainment with active case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Midwifery facilities, Physician reports, Children with Special Health Needs

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic scanning of printed records Database collection and storage: Oracle, Microsoft SQL Server

Data Analysis Data analysis software: SAS, Stat-exact Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: Newborn Hearing/ Newborn Bloodspot Screening Programs

Funding Funding source: 100% MCH funds Other Web site: http://www.maine.gov/dhhs/boh/cshn/birth_defects/index.html Contacts Toni G Wall, MPA Department of Health & Human Services 11 State House Station, 286 Water St.-7th floor Augusta, ME 4333 Phone: 207-287-5350 Fax: 207-287-5355 E-mail: [email protected] Diane C Haberman, MSW, LCSW Department of Health & Human Services 11 State House Station, 286 Water St. 7th floor Augusta, ME 4333 Phone: 207-287-8424 Fax: 207-287-5355 E-mail: [email protected]



Maryland

Maryland Birth Defects Reporting and Information System (BDRIS)

Purpose: Surveillance, Referral to Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1984 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Prevention and Health Promotion Administration ) Population covered annually: 75,000 Statewide: Yes Current legislation or rule: Health-General Article, Section 18-206; Annotated Code of Maryland Legislation year enacted: 1982

Case Definition Outcomes covered: Selected birth defects - anencephaly, spina bifida, hydrocephaly, cleft lip, cleft palate, esophageal atresia/stenosis, rectal/anal atresia, hypospadias, reduction deformity - upper or lower limb, congenital hip dislocation, and Down syndrome until 2009, then all significant birth defects Pregnancy outcome: Livebirths(All gestational ages and birth weights,, Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or ≥500 grams weight; reports accepted on fetal deaths <500 grams or <20 weeks gestation if sent to us.), Elective terminations (Reports accepted on terminations <500 grams or <20 weeks gestation if sent to us.BDRIS has no specific legal authority to collect information on terminations. Maryland does not require that any certificate be filed with Vital Records for a termination) Age: Newborn Residence: All in-state births

Surveillance Methods Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Sickle Cell Disease, Critical Congenital Heart Defect follow Up Program Delivery Hospitals: Primary source: sentinel birth defects hospital report form; electronic reporting began 5/1/13 Other sources: Midwifery facilities

Case Ascertainment Conditions warranting chart review in the newborn period: All fetal death certificates Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.) Database collection and storage: Access, Mainframe, Visual dBASE, SAS, ASCII files; as of 5/1/13 data stored on vendor server

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Service delivery, Referral, Grant proposals, Education/public awareness

System integration System integration: As of 5/1/13, the birth defects data collection is integrated into the same electronic system in which we collect hearing and CCHD screening data.

Funding Funding source: 100% General state funds Web site: http://phpa.dhmh.maryland.gov/genetics/SitePages/bdris.aspx Surveillance reports on file: All reports submitted to CDC Contacts Debbie Badawi, MD Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 424 Baltimore, MD 21201 Phone: 410-767-6625 Fax: 443-333-7956 E-mail: [email protected] Donna X. Harris Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 423 Baltimore, MD 21201 Phone: 410-767-5642 Fax: 443-333-7956 E-mail: [email protected]



Massachusetts

Massachusetts Birth Defects Monitoring Program (MBDMP)

Purpose: Surveillance, Research, Public health program evaluation, assist community health assessments Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1997 Earliest year of available data: 1999 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 73,000 Statewide: Yes Current legislation or rule: Massachusetts General Laws, Chapter 111, Section 67E in 1963. In 2002 Massachusetts Legislature amended this statute, expanding the birth defects monitoring program. In 2009 regulations for a Congenital Anomalies Registry, 105 CMR 302.000, were promulgated. Legislation year enacted: 1963 (amended 2002, regulations 2009)

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (≥20 wks gestation or ≥350 grams), Other pregnancy losses (elective or spontaneous, all gestational ages and weights) Age: 1 year Residence: In- and out-of-state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Delivery Hospitals: Disease index or discharge index, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: All infant deaths (excluding prematurity), Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM


measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness

System integration System links: Link case finding data to final birth file, Link case finding data to open and closed birth file, open and closed fetal file, and Pregnancy to Early Life Longitudinal (PELL) data system

Funding Funding source: 25% General state funds, 75% MCH funds Web site: www.mass.gov/dph/birthdefects Surveillance reports on file: Annual or bi-annual reports, 1999 through 2010 Contacts Marlene Anderka, ScD, MPH Massachusetts Department of Public Health, Bureau of Family Health and Nutrition 250 Washington Street, 5th floor Boston, MA 2108 Phone: 617-624-6045 Fax: 617-624-5574 E-mail: [email protected] Cathleen Higgins, BA Massachusetts Department of Public Health, Bureau of Family Health and Nutrition 250 Washington Street, 5th floor Boston, MA 2108 Phone: 617-624-5510 Fax: 617-624-5574 E-mail: [email protected]



Michigan

Michigan Birth Defects Registry (MBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Prevalence and mortality statistics Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1992 Earliest year of available data: 1992 Organizational location: Department of Health (Vital Statistics) Population covered annually: 112,000 Statewide: Yes Current legislation or rule: Public Act 236 of 1988 Legislation year enacted: 1988

Case Definition Outcomes covered: Congenital anomalies, certain infectious diseases, conditions caused by maternal exposures and other diseases of major organ systems Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks or >400 grams) Age: Up to two years after delivery except that reporting to age 12 for FASD beginning in 2013 Residence: Michigan births regardless of residence, out of state births diagnosed or treated in Michigan regardless of residence

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, Fetal deaths since 2004 only Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Cancer registry Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index, Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect Coding: ICD-9-CM


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: FoxPro

Data Analysis Data analysis software: SPSS, SAS, Access, Fox-pro, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness

System integration System links: Link to other state registries/databases, Link case finding data to final birth file, CSHCS, WIC System integration: No, data from vital records and other sources are extracted and loaded into registry as opposed to truly integrated database structures.

Funding Funding source: 10% CDC grant, 90% Vital Records fees Web site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670---,00.html Additional information on file: Http://www.michigan.gov/mdch/0,1607,7-132-2945_5221-16665--,00.html Contacts Glenn Edward Copeland, MBA Michigan Birth Defects Registry 201 Townsend Lansing, MI 48913 Phone: 517-335-8677 Fax: 517-335-8711 E-mail: [email protected] Lorrie Simmons, RHIT Michigan Department of Community Health 201 Townsend Lansing, MI 48913 Phone: 517-335-9197 Fax: 517-335-8711 E-mail: [email protected]



Minnesota

Minnesota Birth Defects Information System (BDIS)

Purpose: Surveillance, Research, Referral to Services, Targeted prevention to higher risk populations. Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2005 Earliest year of available data: 2006 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 70,000 Statewide: No, currently covering about 85% of live births in MN. Statewide surveillance is expected to be completed by the end of 2014. Coverage is complete for smaller regions of the state. Prevalence estimates from 2006-2010 are available for the two largest counties in Minnesota, Hennepin and Ramsey counties, which account for just over 40% of MN births. For 2011 births, coverage expanded to complete in the 7-county metro area. Current legislation or rule: MS 144.2215-2219 Legislation year enacted: 2004

Case Definition Outcomes covered: Major structural and genetic defects diagnosed up to 1 year of age identified by CDC and NBDPN. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 1 year after delivery Residence: In-state and out of state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Third party payers: Medicaid databases, In 2014, All-Payer Claims Database will become available. Other sources: Statewide de-identified hospital discharge dataset

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any birth certificate with a birth defect box checked, All deaths prior to age 2 with a birth defect indicated as cause of death on death certificates, starting with 2009 births Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history

Father: Identification information (name, address, date-of-birth, etc.), Family history

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Remote access to medical records in two hospitals Database collection and storage: Web-based department-wide integrated disease surveillance database. Maven platform by Consilience Software.

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Education/public awareness, Prevention projects, Collaboration with Environmental Public Health Tracking Program

System integration System links: Link to other state registries/databases, Link case finding data to final birth file, Sharing of confirmed cases with key contacts at local public health agencies for service referral. LPH staff can log on to our the birth defects database to view relevant case information. In 2012, LPH began entering follow up and service/program updates System integration: The Birth Defects Information System (BDIS) is integrated with Newborn Hearing program and Heritable Conditions. The databases share a model on the same platform, but they are managed separately. (This platform, Maven by Consilience Software, is also used by many infectious disease surveillance systems in MN and access is limited by disease/user role.) Additional integration with the Newborn Screening program will take place in 2014 as universal newborn CCHD screening is implemented.

Funding Funding source: 90% General state funds, 10% CDC grant Other Web site: http://www.health.state.mn.us/divs/cfh/program/cyshn/bdmaintro.cfm Contacts Sook Ja Cho, PhD, MPH, BSN Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-4931 Fax: 651-201-3590 E-mail: [email protected] Barbara Frohnert, MPH Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-5953 Fax: 651-201-3590 E-mail: [email protected]



Mississippi

Mississippi Birth Defects Surveillance Registry

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Title V Children with Special Healthcare Needs Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health, Genetic Services Bureau) Population covered annually: 40,000 Statewide: Yes Current legislation or rule: Section 41-21-205 of the Mississippi Code of 1972 Legislation year enacted: 1997

Case Definition Outcomes covered: The infant/fetus must have a reportable structural defect, newborn screening disorder, functional or metabolic disorder, genetically determined or a defect resulting from an environmental influence during embryonic or fetal life. Pregnancy outcome: Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Birth to 21 years Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports Case Ascertainment Coding: ICD-9-CM


measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, New web based program

Data Analysis Data analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables

System integration System links: Newborn Screening Program Newborn screening program database and Early Hearing program database

Funding Funding source: 100% Genetic screening revenues Other Web site: www.HealthyMS.com Contacts Ashlyn N. Booker, MBA Mississippi State Department of Health 570 East Woodrow Wilson Ave Jackson, Mississippi 39215-1700 Phone: 601 576-7619 Fax: 601 576-7498 E-mail: [email protected] Ninglong Han, MS Mississippi State Department of Health 570 East Woodrow Wilson Ave Jackson, Mississippi 39215-1700 Phone: 601 576-8165 Fax: 601 576-8168 E-mail: [email protected]



Missouri

Missouri Birth Defects Surveillance System

Purpose: Surveillance, Research Partner: Environmental Agencies/Organizations, Legislators Program status: Currently collecting data Start Year: 1985 Earliest year of available data: 1980 Organizational location: Department of Health (Vital Statistics) Population covered annually: 79,000 Statewide: Yes Case Definition Outcomes covered: ICD-9 codes 740-759, plus genetic, metabolic, and other disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Fetal death certificates are only source of data) Age: Up to one year after delivery Residence: In- and out-of-state births to state residents

Surveillance Methods Case ascertainment: Population-based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Case Ascertainment Coding: ICD-9-CM, ICD-10

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: SAS

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Education/public awareness

System integration System links: Link case finding data to final birth file

Funding Funding source: 100% MCH funds Web site: http://health.mo.gov/data/birthdefectsregistry/index.php Surveillance reports on file: MO Birth Defects Report 1996-2000 Contacts Chenghui Liao, PhD MO Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood Drive Jefferson City, MO 65102 Phone: 573-751-6299 Fax: 573-526-4102 E-mail: [email protected] Ray Shell, BS Missouri Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood Drive Jefferson City, MO 65102 Phone: 573-756-3801 Fax: 573-526-4102 E-mail: [email protected]



Montana

Montana Birth Outcomes Monitoring System (MBOMS)

Purpose: Surveillance, Referral to Prevention/Intervention Services Partner: Private practice physicians Program status: No surveillance program Start Year: 1999 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 12,000 Statewide: Yes Current legislation or rule: None Case Definition Outcomes covered: Major structural birth defects, chromosomal anomalies specified in the CDC 45 reportables for births occurring in calendar years 200 through 2004. Registry suspended beginning with calendar year 2005 births due to loss of CDC funding. Pregnancy outcome: All gestational ages

Comments: Due to lack of funding, Montana is no longer performing active surveillance. Informal active/passive surveillance continues and linkages between ascertainment and services are in place and supported. Data and program linkages exist between newborn hearing screening, birth certificates, and newborn screening. Contacts Rachel Kynett, RN Children's Special Health Services Montana Dept. of Public Health and Human Services PO Box 202951 Helena, MT 59620 Phone: 406-444-3617 Fax: 406-444-2790 E-mail: [email protected]



Nebraska

Nebraska Birth Defect Registry

Purpose: Surveillance, Research Partner: Hospitals, Universities, Early Childhood Prevention Programs, Vital Statistics, Maternal Child Health Program status: Currently collecting data Start Year: 1972 Earliest year of available data: 1973 Organizational location: Department of Health (Office of Epidemiology and Informatics) Population covered annually: 26000 Statewide: Yes Current legislation or rule: Laws 1972, LB 1203, §1, §2, §3, §4 (alternate citation: Public Health & Welfare [Codes] §71-645, §71-646, §71-647, §71-648, §71-649) Legislation year enacted: 1972

Case Definition Pregnancy outcome: Livebirths (≥20 weeks, ≥500 grams), Fetal deaths - stillbirths, spontaneous abortions, etc. (≥20 weeks, ≥500 grams) Age: Up to one year after delivery Residence: In state birth to state resident, out of state births to state residents when Out State Jurisdiction allows use of data

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Fetal death certificates Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Midwifery facilities, Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any birth certificate with a birth defect box checked Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: SQL

Data Analysis Data analysis software: SAS, Reports from Netsmart Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Grant proposals

System integration System links: Link to other state registries/databases System integration: Births, deaths, and fetal deaths

Funding Funding source: 100% MCH funds Other Web site: http://dhhs.ne.gov/publichealth/Pages/vitalrecords_partners.aspx Surveillance reports on file: Http://dhhs.ne.gov/publichealth/Pages/ced_vs.aspx Contacts Michelle Hood NE Department of Health & Human Services 220 S 17th St Lincoln, NE 68509 Phone: 402-471-0147 Fax: 402-471-9728 E-mail: [email protected] Nila Irwin NE Department of Health & Human Services 1033 O St Suite 130 Lincoln, NE 68509 Phone: 402-471-0354 Fax: 402-742-2388 E-mail: [email protected]



Nevada

Nevada Birth Outcomes Monitoring System (NBOMS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Early Childhood Prevention Programs, Legislators, Bureau of Child, Family, & Community Wellness Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2005 Organizational location: Department of Health (Maternal and Child Health), State Health Division, Office of Health Statistics and Surveillance, Bureau of Health Statistics, Planning, Epidemiology and Response Population covered annually: 35,000 Statewide: Yes Current legislation or rule: NRS 442.300 - 442.330 - Birth Defects Registry Legislation *** Regulation = NAC 442 Legislation year enacted: 1999

Case Definition Outcomes covered: Major birth defects and genetic diseases Pregnancy outcome: Livebirths (20 weeks of gestation and greater with all birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (20 weeks gestation and greater) Age: Birth to 7 years of age Residence: In-state births

Surveillance Methods Case ascertainment: Combination of active & passive, Population-based, Hospital-based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, hospital medical records, diagnostic/laboratory reports Other state based registries: Newborn hearing screening program, Newborn metabolic screening program, Cancer registry, AIDS/HIV registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period:Facial dysmorphism or abnormal facies, Failure to thrive, Developmental delay, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database collection and storage: Access

Data Analysis Data analysis software: Access Quality assurance: Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Birth registry data is manually linked to birth defect data, but the actual databases are not linked. System integration: No Other Surveillance reports on file: Http://health.nv.gov/PUBLICATIONS/OHSS/2009_NBOMS_Annual_Report.pdf Contacts Prasanjit Chakma, MPH NV Birth Outcomes Monitoring System, Office of Public Health Informatics and Epidemiology (OPHIE), Division of Public and Behavioral Health, Dept. of Health and Human Services 3811 W. Charleston Blvd, Ste. 205 Las Vegas, NV 89102 Phone: 702-486-9855 Fax: 702-486-0490 E-mail: [email protected] Brad Towle, MA, MPA Office of Health Statistics and Surveillance (OHSS) 4150 Technology Way, Suite 200 Carson City, NV 89706 Phone: 775-684-4243 E-mail: [email protected]



New Hampshire

New Hampshire Birth Conditions Program (NHBCP)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2003 Earliest year of available data: 2003 Organizational location: University, Department of Health (Geisel School of Medicine at Dartmouth, Bureau of Special Medical Services, Bureau of Nutrition and Health Promotion, Department of Environmental Services Bureau of Environmental Health) Population covered annually: 12,500 Statewide: Yes Current legislation or rule: RSA 141:J, NH Administrative Rules He-P 3012 Legislation year enacted: 2008

Case Definition Outcomes covered: All major birth defects and genetic diseases recommended by the CDC/NBDPN Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Currently collecting birth to age 2 Residence: All New Hampshire residents, those born in-state as well as out of state

Surveillance Methods Case ascertainment: Active Case Finding, population based Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program Delivery Hospitals: Discharge summaries, Postmortem/pathology logs Pediatric & tertiary care hospitals: Discharge summaries, Postmortem/pathology logs, Specialty outpatient clinics

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, Elective terminations that have confirmed birth conditions by autopsy or confirmed by clinical assessment Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Oracle, AURIS, a web-based reporting system currently utilized by the NH DHHS Newborn Hearing Screening Program, has added a module to the currently operating system to meet the birth defects tracking requirements.

Data Analysis Data analysis software: SPSS, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Observed vs. expected analyses, Epidemiologic studies (using only program data), Service delivery, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases System integration: Integrated into the NH DHHS Newborn Hearing Screening Program registry, a state-wide universal hearing program for all NH infants. This system also receives weekly uploads from the State's Vital Records system that is then linked with the birth conditions and newborn screening data. In addition, in 2011 the NH Birth Conditions Program database was linked with the Title V program database with data on children receiving Special Medical Services in NH

Funding Funding source: 100% CDC grant Web site: www.nhbcp.org Surveillance reports on file: State and county data reports Contacts Stephanie Miller, RN, MSN, MPH NH Birth Conditions Program One Medical Center Drive Lebanon, NH 3756 Phone: 603-653-3163 Fax: 603-653-0712 E-mail: [email protected] John Moeschler, MD, MS NH Birth Conditions Program One Medical Center Drive Lebanon, NH 3756 Phone: 603-653-6053 E-mail: [email protected]



New Jersey

Special Child Health Services Registry (SCHS Registry)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators, Neurodevelopmental Centers; Federally Qualified Health Care Centers; State Parent Advocacy Network Program status: Currently collecting data Start Year: 1928 Earliest year of available data: 1985 Organizational location: Department of Health (Special Child Health and Early Intervention Services) Population covered annually: 105,000 Statewide: Yes Current legislation or rule: NJSA 26:8-40.2 et seq., NJAC 8:20 - Ammended: 1990, 1991, 1992, 2005, Readopted: 2010, Rule Amendments Adopted: 2009; Readopted: 2010 Legislation year enacted: 1983

Case Definition Outcomes covered: All birth defects (structural, genetic, and biochemical), all Autism Spectrum Disorders, and severe hyperbillirubinemia, are required to be reported; all special needs and any condition which places a child at risk (prematurity, asthma, developmental delay) are also reported, but not required. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Mandated reporting of birth defects diagnosed through age 5, voluntary reporting of birth defects diagnosed > age 6 and all children diagnosed with Special Needs conditions who are ≤22 years Residence: All NJ residents, in and out of state

Surveillance Methods Case ascertainment: combination of active & passive, Population-based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Autism Registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Specialty outpatient clinics, Quality assurance chart reviews for 3 month period Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Laboratory logs, Specialty outpatient clinics, Quality assurance visit consisting of chart review of 3 month period Third party payers: Universal billing database for quality assurance Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Midwifery facilities, Physician reports, Special Child Health Services county-based Case Management Units, parents, medical examiners, Autism diagnosticians and treatment centers

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All neonatal deaths, All death certificates for < 3 years of age Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant

deaths (excluding prematurity), Ocular conditions, Any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Mainframe, SAS; SQL

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness, Merge with birth/death certificates Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link case finding data to final birth file, link to hearing screening registry System integration: Autism Registry is fully integrated. Newborns having failed Pulse Oximetry Screening are integrated with Registry. Newborn hearing screening registry provides direct report to the SCHS Registry. Metabolic screening program provides direct report to SCHS Registry. Autism Registry is included in the Registry. Special Child Health Services county-based Case Management Referral System is included in the Registry.

Funding Funding source: 90% MCH funds, 10% CDC grant

Other Web site: http://www.state.nj.us/health/fhs/sch/schr.shtml Contacts Leslie M. Beres-Sochka, MS Hyg New Jersey Department of Health, Special Child Health and Early Intervention Services, Early Identification & Monitoring Program PO Box 364, Trenton, NJ 8625 Phone: 609-292-5676 Fax: 609-633-7820 E-mail: [email protected] Mary M. Knapp, MSN, RN New Jersey Department of Health, Special Child Health and Early Intervention Services, Early Identification & Monitoring Program PO Box 364, Trenton, NJ 8625 Phone: 609-292-5676 Fax: 609-633-7820 E-mail: [email protected]



New Mexico

New Mexico Birth Defects Prevention and Surveillance System (NM BDPASS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Environmental Agencies/Organizations, Universities, Legislators, Private providers Program status: Currently collecting data Start Year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 28,000 Statewide: Yes Current legislation or rule: In January 2000, birth defects became a reportable condition. These conditions must be reported to the New Mexico Department of Health's Epidemiology and Response Division. Specifically, the conditions must be reported to the Environmental Health Epidemiology Bureau. Legislation year enacted: 2000

Case Definition Outcomes covered: 740.0-760.01, with emphasis on 12 birth defects that are nationally consistent data and measures for the Environmental Public Health Tracking Program. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Birth through age 4 Residence: Births to New Mexico residents occurring in New Mexico.

Surveillance Methods Case ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Specialty outpatient clinics, including neurosurgery, plastic surgery, pediatric surgical specialists, prenatal diagnostic providers Third party payers: Medicaid databases, Health Maintenance organizations (HMOs), Indian health services, Children's Medical Services Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Conditions warranting chart review beyond the newborn period: Cardiovascular condition Coding: CDC coding system based on BPA, ICD-9-CM, ICD-10 for deaths

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Stata, version 12.1

Data Analysis Data analysis software: Stata version 12.1 Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Rates by demographic and other variables, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file

Funding Funding source: 100% CDC grant Other Web site: https://nmtracking.org/en/health_effects/birthdefects/about_birthdefects/ Contacts Heidi R Krapfl, MS NM Department of Health, Epidemiology and Response Division 1190 St. Francis Drive, Suite N1304 Santa Fe, NM 87505 Phone: 505-476-3577 Fax: 505-827-0013 E-mail: [email protected]



New York

New York State Congenital Malformations Registry (CMR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Community outreach and education Partner: Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1982 Earliest year of available data: 1983 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 250,000 Statewide: Yes Current legislation or rule: Public Health Law Article 2, Title II, Section 225(5)(t) and Article 2, Title I, Section 206(1)(j): Codes, Rules and Regulations, Chapter 1, State Sanitary Code, Part 22.3 Legislation year enacted: 1982

Case Definition Outcomes covered: Any major structural, functional or biochemical abnormality determined genetically or induced during gestation. A detailed list is available upon request. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: 2 years Residence: In-state and out-of-state births to state residents; in-state births to non-residents; all children born in or residing in New York, up to age 2

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment; population-based Other state based registries: NYS Dept. of Health statewide hospital discharge database Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, In regions where active surveillance is conducted. Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics in regions where active surveillance is conducted. Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All stillborn infants Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM prior to 1992


measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Oracle, Sybase

Data Analysis Data analysis software: SAS, Access, JAVA Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects


Funding Funding source: 13.6% General state funds, 10.2% MCH funds, 3.4% Genetic screening revenues, 50.2% CDC grant, 13.3% Other federal funding (non-CDC grants), 10% State Superfund Other Web site: http://www.health.ny.gov/birthdefectsSurveillance reports on file: Reports for 1983 - 2008 births Contacts Deborah J. Fox, MPH New York State Department of Health Empire State Plaza, Corning Tower, Room 1203 Albany, NY 12237 Phone: 518-402-7990 Fax: 518-402-7959 E-mail: [email protected] Marilyn L. Browne, PhD New York State Department of Health Empire State Plaza, Corning Tower, Room 1203 Albany, NY 12237 Phone: 518-402-7990 Fax: 518-402-7959 E-mail: [email protected]



North Carolina

N.C. Birth Defects Monitoring Program (NCBDMP)

Purpose: Surveillance, Research, Referral to Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1987 Earliest year of available data: 1989 Organizational location: Department of Health (State Center for Health Statistics) Population covered annually: 120,000 Statewide: Yes Current legislation or rule: NCGS 130A-131 Legislation year enacted: 1995

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: 1 year Residence: NC resident births, including out of state deliveries

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Fetal death certificates Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected procedure codes, Any birth certificate with a birth defect box checked, All stillborn infants, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Capture-recapture analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file, Link to environmental databases, Early Intervention Program

Funding Funding source: 90% General state funds, 10% MCH funds Web site: http://www.schs.state.nc.us/units/bdmp/ Contacts Robert E. Meyer, PhD, MPH State Center for Health Statistics 222 N. Dawson St. Raleigh, NC 27603 Phone: 919-733-4728 Fax: 919-733-8485 E-mail: [email protected] Jennifer Stock State Center for Health Statistics 222 N. Dawson St. Raleigh, NC 27603 Phone: 919-733-4728 Fax: 919-733-8485 E-mail: [email protected]



North Dakota

North Dakota Birth Defects Monitoring System (NDBDMS)

Purpose: Surveillance Partner: Advocacy Groups, Universities, The North Dakota Department of Human Services Program status: Currently collecting data Start Year: 2002 Earliest year of available data: 1994 Organizational location: Department of Health (Maternal and Child Health, Vital Statistics, Division of Children's Special Health Services) Population covered annually: 10,591 Statewide: Yes Current legislation or rule: North Dakota Century Code: 1. 23-41-04. Birth report of child with special health care needs made to department. Within three days after the birth in this state of a child born with a visible congenital deformity, the licensed maternity hospital or home in which the child was born, or the legally qualified physician or other person in attendance at the birth of the child outside of a maternity hospital, shall furnish the department a report concerning the child with the information required by the department. 2. 23-41-05. Birth report of child with special health care needs - Use - Confidential. The information contained in the report furnished to the department under section 23-39-04 concerning a child with a visible congenital deformity may be used by the department for the care and treatment of the child pursuant to this chapter. The report is confidential and is solely for the use of the department in the performance of its duties. The report is not open to public inspection nor considered a public record. Legislation year enacted: 1941

Case Definition Pregnancy outcome: Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: 12 months or within the year of birth. Residence: In-state birth/s to state resident.

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs Pediatric & tertiary care hospitals: Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Coding: ICD-9-CM, ICD-10-CM

Data Collected Infant/fetus: Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, Mainframe, Excel and SPSS

Data Analysis Data analysis software: SPSS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness

System integration System integration: No

Funding Funding source: 100% State System Development Initiative (SSDI) Other Web site: http://www.ndhealth.gov/cshs/ Surveillance reports on file: North Dakota Birth Defects Monitoring System Summary Report 2001-2005 North Dakota Birth Defects Monitoring System Summary Report 1995-1999 Contacts Devaiah Muthappa Muccatira, MS Division of Children's Special Health Services, North Dakota Department of Health 600 East Boulevard Avenue, Dept.301 Bismarck, North Dakota 58505-200 Phone: 701-328-4963 Fax: 701-328-1645 E-mail: [email protected] Tamara Lynn Gallup-Millner, RN,MPH Division of Children's Special Health Services North Dakota Department of Health 600 East Boulevard Avenue, Dept.301 Bismarck, North Dakota 58505-200 Phone: 701-328-4814 Fax: 701-328-1645 E-mail: [email protected]



Ohio

Ohio Connections for Children with Special Needs (OCCSN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, State Child Fatality Review Program; Ohio Collaborative to Prevent Infant Mortality Program status: Currently collecting data Start Year: 2006 Earliest year of available data: 2008 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 140,000 Statewide: Yes Current legislation or rule: Ohio Revised Code (ORC) 3705.30-3705.36 authorizes the department to implement a statewide birth defects information system and mandates hospital reporting (2000). Ohio Administrative Code (OAC) 3701-57-01 to 3701-57-04 specifies conditions to be reported and methods for reporting (2010). Legislation year enacted: 2000

Case Definition Outcomes covered: Major birth defects recommended by NBDPN, disorders on the state newborn bloodspot screening panel, disorders related to infant hearing loss Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 5 years of age Residence: Ohio resident children up to 5 years of age

Surveillance Methods Case ascertainment: Passive case-finding with case confirmation, Passive case-finding without case confirmation, Passive case-finding with case confirmation for certain disorders Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn metabolic screening program, Genetics data system Delivery Hospitals: Hospital medical records and billing records Pediatric & tertiary care hospitals: Hospital medical records and billing records Other sources: Genetics Clinic Data within some hospitals

Case Ascertainment Conditions warranting chart review in the newborn period: Any birth certificate with a birth defect box checked, ICD-9 and ICD-10 (death certificates) or named congenital anomaly Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.), Hospital reporters upload CSV flat file to secure website for integration. Small volume hospitals can manually key data into user interface on secure internet site Database collection and storage: SQL server. External system data methods and storage: ODBC connection with SAS. SAS import of other data sets and merge export of cohort line lists to MS Excel for follow-up.

Data Analysis Data analysis software: SAS, MS Excel, FRIL Quality assurance: Validity checks, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Observed vs. expected analyses, Referral, Grant proposals, Education/public awareness

System integration System links: Link to other state registries/databases, OCCSN data system shares common demographic file with Vital Statistics and Genetics Program data systems.

Funding Funding source: 100% CDC grant Other Web site: http://www.odh.ohio.gov/odhprograms/cmh/bdefects/birthdefects1.aspx Surveillance reports on file: 2012 Annual Report Contacts Anna Starr, BS Ohio Department of Health 246 N. High Street Columbus, OH 43215 Phone: 614-995-5333 Fax: 614-728-3616 E-mail: [email protected] Norma Ryan, PhD Ohio Department of Health 246 N. High Street Columbus, OH 43215 Phone: 614-752-9523 Fax: 614-564-2504 E-mail: [email protected]



Oklahoma

Oklahoma Birth Defect Registry (OBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Data used to educate public in the Oklahoma initiative to reduce Infant Mortality Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1992 Organizational location: Department of Health (Screening and Special Services) Population covered annually: 52,000 Statewide: Yes Current legislation or rule: 63 - 1-550.2 Legislation year enacted: 1992

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 3 years after delivery Residence: Oklahoma

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Medical Examiner's autopsy reports Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.) Other sources: MFM/Neonatology Case Conference

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a CDC/BPA code, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database collection and storage: Access

Data Analysis Data analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Needs assessment, Service delivery, Referral, Education/public awareness, Prevention projects

Funding Funding source: 64% MCH funds, 36% CDC grant Other Web site: http://www.ok.gov/health/Child_and_Family_Health/Screening,_and_Special_Services/Oklahoma_Birth_Defects_Registry_/ Surveillance reports on file: Yes Contacts Sharon A Vaz, MS, BSN Oklahoma State Department of Health 1000 N.E. 10th St Room 709 OKC, OK 73117 Phone: 405-271-6617 Fax: 405-271-4892 E-mail: [email protected]



Oregon

Oregon Birth Anomalies Registry (BAR)

Purpose: Surveillance Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities Program status: Currently collecting data Start Year: 2013 Earliest year of available data: 2008 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 45,000 Statewide: Yes Current legislation or rule: None Case Definition Outcomes covered: EPHT-12 Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: 5 years Residence: In-state birth to state resident

Surveillance Methods Case ascertainment: Link birth certificate to full hospital discharge dataset and to Medicaid claims Vital Records: Birth certificates Third party payers: Medicaid databases Other sources: Full hospital discharge database Case Ascertainment Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, date-of-birth), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Case data entirely from linkage of existing records. Database collection and storage: Access, SQL server, SPSS, Mainframe

Data Analysis Data analysis software: SPSS Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Baseline rates

Funding Funding source: 95% MCH funds, 5% CDC grant Contacts Suzanne B Zane, DVM, MPH Maternal and Child Health Section, Center for Prevention and Health Promotion, Oregon Public Health Division 800 NE Oregon Street, Suite 825 Portland, Oregon 97232 Phone: 971-673-0559 Fax: 971-673-0240 E-mail: [email protected]



Pennsylvania

Pennsylvania Birth Defects Surveillance Database (BDSS)

Program status: No surveillance program Contacts Luann Cartwright PA Department of Health, Bureau of Family Health 625 Forster Street, Health & Welfare Bldg. 7th Floor East Harrisburg, PA 17120 Phone: 717-783-8143 Fax: 717-772-0323 E-mail: [email protected] Joseph Wagner PA Department of Health, Bureau of Family Health 625 Forster Street, Health & Welfare Bldg.7th Floor East Harrisburg, PA 17120 Phone: 717-783-8143 Fax: 717-772-0323 E-mail: [email protected]



Puerto Rico

Puerto Rico Birth Defects Surveillance and Prevention System (PRBDSS)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Services for Children with Special Medical Needs Division) Population covered annually: 40,000 Statewide: Yes Current legislation or rule: Law #351 Legislation year enacted: September 16, 2004

Case Definition Outcomes covered: Selected birth defects covered: Neural Tube defects, cleft lip and/or cleft palate, anotia, microtia, anophthalmia, microphthalmia, limb defects, talipes equinovarus, gastrochisis, omphalocele, Trisomy 13, 18 and 21, Truner's syndrome, 22q11.2 deletion syndrome, Albinism, Jarcho-Levin syndrome, major congenital heart defects, ambiguous genitalia, Hypospadias , and bladder extrophy. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Up to 6 years after delivery Residence: In-state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs Third party payers: Medicaid databases, Health Maintenance organizations (HMOs) Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Cardiovascular condition

Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Prenatal diagnostic information Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SPSS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

Funding Funding source: 68% MCH funds, 32% CDC grant Other Web site: http://www.salud.gov.pr/Programas/CampanaAcidoFolico/Pages/default.aspx Surveillance reports on file: Puerto Rico Birth Defects Annual Report 2012 and 2010 Contacts Alma M Martinez, MPH Puerto Rico Department of Health PO Box 70184 San Juan, PR 936 Phone: (787)765-2929 xt.4571 E-mail: [email protected] Miguel Valencia, MD Puerto Rico Department of Health PO Box 70184 San Juan, PR 936 Phone: (787)765-2929 xt.4572 E-mail: [email protected]



Birth Defects Research (Part A) XX:S1-S171 (2014)

Rhode Island

Rhode Island Birth Defects Surveillance Program

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Families Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2002 Organizational location: Department of Health (Center for Health Data and Analysis) Population covered annually: 11,000 Statewide: Yes Current legislation or rule: Title 23, Chapter 13.3 of Rhode Island General Laws requires the development of a birth defects surveillance, reporting, and information system that will a) describe the occurrence of birth defects in children up to age five; b) detect trends of morbidity and mortality; and c) identify newborns and children with birth defects to intervene on a timely basis for treatment. Legislation year enacted: 2003

Case Definition Outcomes covered: All birth defects and genetic diseases Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal DeathsFetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (20 weeks gestation and greater) Age: 4 years Residence: RI maternal residence

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, RI has an integrated child health information system called KIDSNET, which links data from 9 programs including: Newborn Developmental Risk Screening, Universal Newborn Hearing, Early Intervention, WIC, and home visiting Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Physician Reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All stillborn infants, All elective abortions, All prenatal diagnosed or suspected cases, Chart reviews are conducted for infants born at the regional perinatal center and the 6 other maternity hospitals who were identified with an ICD-9-CM code 740-759 and 760.71, and other sentinel conditions Conditions warranting chart review beyond the newborn period: Any infant with a codable defect

Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access, Oracle

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, KIDSNET, hospital discharge data System integration: Integrated into KIDSNET for web-based provider reporting

Funding Funding source: 5% General state funds, 10% MCH funds, 85% CDC grant Other Web site: www.health.ri.gov/programs/birthdefects Surveillance reports on file: 2012 Rhode Island Birth Defects Data Book Contacts Samara Viner-Brown, MS Rhode Island Department of Health 3 Capitol Hl Providence, RI 2908 Phone: (401)222-5122 E-mail: [email protected] William Arias, MPH Rhode Island Department of Health 3 Capitol Hl Providence, RI 2908 Phone: (401)222-7930 E-mail: [email protected]



South Carolina

South Carolina Birth Defects Program (SCBDP)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Greenwood Genetics Center (GGC) Program status: Currently collecting data Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 57,100 Statewide: Yes Current legislation or rule: A281, R308, H4115 Legislation year enacted: 2004

Case Definition Outcomes covered: Central nervous system defects, eye and ear defects, cardiovascular defects, orofacial defectcts, gastrointestinal defects, genitourinary defects, musculoskeletal defects, and chromosomal defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to two years of age Residence: In-state births to state residents

Surveillance Methods Case ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Access, SQL Server

Data Analysis Data analysis software: SAS, Access, Arc-GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Time-space cluster analyses, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link case finding data to final birth file System integration: SCBDP data is integrated with SC Vital Records.

Funding Funding source: 100% General state funds Other Web site: http://www.scdhec.gov/Health/FamilyPlanning/DataStaticsonPregnancyBabyHealth/BirthDefects/ Contacts Vinita Oberoi Leedom, MPH, CIC SC Department of Health and Environmental control 2100 Bull Street Columbia, SC 29201 Phone: 803-898-0771 Fax: 803-898-2065 E-mail: [email protected] Michael Grady Smith, MSPH SC Department of Health and Environmental Control 2100 Bull Street Columbia, SC 29201 Phone: 803-898-3740 Fax: 803-898-2065 E-mail: [email protected]



South Dakota

Program status: No surveillance program Contacts Darlene Bergeleen, BS, RN SD Dept Health 600 E. Capitol Ave. Pierre, SD 57501 Phone: 605-773-3361 Fax: 605-773-5683 E-mail: [email protected]



Tennessee

Tennessee Birth Defects Registry (TBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 1999 Population covered annually: 85,000 Statewide: Yes Current legislation or rule: TCA 68-5-506 Legislation year enacted: 2000

Case Definition Outcomes covered: 45 major structural birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Prior to July 1st 2010: ≥500 grams, or in the absence of weight, ≥22 completed weeks of gestation; July 1st 2010 and later: ≥350 grams, or in the absence of weight, ≥20 completed weeks of gestation) Age: Up to one year after delivery Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: population-based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Newborn metabolic screening program, Hospital Discharge Data System Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other sources: Midwifery facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, ICD-9-CM code 760.71 Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: ICD-9-CM


measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, SQL and SAS

Data Analysis Data analysis software: SAS, Arc-GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Education/public awareness


Funding Funding source: 100% General state funds Web site: http://hit.state.tn.us/Reports.aspx Surveillance reports on file: Tennessee Birth Defects Registry 2006-2010 Contacts Lori B Ferranti, PhD, RN, MBA, MSN Tennessee Dept. of Health 710 James Robertson Parkway, 2nd Floor Nashville, TN 37243 Phone: 615-253-6814 Fax: 615-253-1688 E-mail: [email protected] Yinmei Li, MD, PhD Tennessee Dept. of Health 710 James Robertson Parkway, 2nd Floor Nashville, TN 37243 Phone: 615-741-8190 Fax: 615-253-5187 E-mail: [email protected]



Texas

Texas Birth Defects Epidemiology and Surveillance Branch (TBDES)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Legislators, Researchers (NBDPN, NBDPS, ICBDSR) Program status: Currently collecting data Start Year: 1994 Earliest year of available data: 1996 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 377,274 in 2011 Statewide: Yes Current legislation or rule: Health and Safety Code, Title 2, Subtitle D, Section1, Chapter 87 Legislation year enacted: 1993

Case Definition Outcomes covered: All major structural birth defects and fetal alcohol syndrome Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to one year after delivery and up to 6 years for FAS, special studies and childhood genetic disorders diagnosed after infancy. Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Active Case-finding, Population-based Vital Records: Fetal death certificates for delivery year 2009 to present Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, Genetics, stillbirths and radiology logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics, Genetics, stillbirths and radiology logs Other sources: Midwifery facilities, Licensed birthing centers

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Infants with low birth weight or low gestation (<34 weeks GA ), All stillborn infants Conditions warranting chart review beyond the newborn period: CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Any infant with a codable defect Coding: CDC coding system based on BPA


measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Oracle

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Clinical review, Timeliness, Re-casefinding, re-review of medical records Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects

System integration System links: Link to other state registries/databases, Link to environmental databases, link registry to vital records for demographic data, special projects linking to other files (Texas Health Data for geocodes, Newborn Screening data).

Funding Funding source: 48% General state funds, 52% MCH funds Other Web site: www.dshs.state.tx.us/birthdefects/ Surveillance reports on file: See website for publication and surveillance reports Contacts Mark A Canfield, PhD Birth Defects Epidemiology and Surveillance Branch P.O. Box 149347, Mail Code 1964 Austin, TX 78714-9347 Phone: 512-776-7232 Fax: 512-776-7330 E-mail: [email protected] Lisa K Marengo, MS Birth Defects Epidemiology and Surveillance Branch P.O. Box 149347, Mail Code 1964 Austin, TX 78714-9347 Phone: 512-776-6657 Fax: 512-776-7330 E-mail: [email protected]



Utah

Utah Birth Defect Network (UBDN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Education Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities Program status: Currently collecting data Start Year: 1994 Earliest year of available data: 1994 Organizational location: Department of Health (CSHCN) Population covered annually: 55,000 Statewide: Yes Current legislation or rule: Birth Defect Rule (R398-5) Legislation year enacted: 1999

Case Definition Outcomes covered: Major structural and selected genetic disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 2 years based on mandatory reporting Residence: Maternal residence in Utah at time of delivery

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment; population-based Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics, Champions report live births delivered at their respective hospitals Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Midwifery facilities, Physician reports, Lay midwives

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth, death or fetal death certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, All fetal death certificates, NICU reports, infant deaths are reviewed Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Any infant with a codable defect Coding: CDC coding system based on BPA


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness, Logical checks, duplicate check in tracking and surveillance module, case record form checked for completeness, timeliness through system, manual review of subset of surveillance module case data compared to case record form Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects, Oral Facial Cleft Case-Control Study, UT Center for Birth Defects Research and Prevention, International Clearinghouse for Birth Defects, Local studies

System integration System links: Link to environmental databases, link to Utah genealogic population database

Funding Funding source: 100% MCH funds Other Web site: http://www.health.utah.gov/birthdefect Surveillance reports on file: Http://ibis.health.utah.gov Additional information on file: Scientific Collaboration Protocol

Comments: IBIS indicators for specific birth defects are online. Contacts Amy E Nance, MPH Utah Birth Defect Network 44 N Mario Capecchi Drive, PO Box 144699 Salt Lake City, UT 84114 Phone: 801-883-4661 Fax: 801-323-1578 E-mail: [email protected]



Vermont

Birth Information Network (BIN)

Purpose: Surveillance, Referral to Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Hospital Association Program status: Currently collecting data Start Year: 2006 Earliest year of available data: 2006 Organizational location: Department of Health (Division of Health Surveillance / Statistics) Population covered annually: 6,200 Statewide: Yes Current legislation or rule: Act 32 (TITLE 18 VSA §5087) Legislation year enacted: 2003

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to one year after delivery Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Third party payers: Medicaid databases, Multi-payer claims database Other specialty facilities: Cytogenetic laboratories Other sources: Physician reports, Autopsy reports

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: ICD-9-CM


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: SPSS, Access, Excel Quality assurance: Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Observed vs. expected analyses, Referral, Grant proposals, Education/public awareness


Funding Funding source: 5% General state funds, 95% CDC grant Other Web site: http://healthvermont.gov/tracking/health_birthdefects.aspx Contacts Peggy Brozicevic, B.A. Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 5402 Phone: 802-863-7298 Fax: 802-865-7701 E-mail: [email protected] Brennan David Martin, MPH Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 5402 Phone: 802-863-7611 Fax: 802-865-7701 E-mail: [email protected]



Virginia

Virginia Congenital Anomalies and Reporting Education System (VaCARES)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments Program status: Currently collecting data Start Year: 1985 Earliest year of available data: 2004 Organizational location: Department of Health (Family Health Services) Population covered annually: 101,000 Statewide: Yes Current legislation or rule: Code of Virginia, § 32.1-69.1 Legislation year enacted: 1985

Case Definition Outcomes covered: Major and non-major birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 2 years of age Residence: Any diagnoses occurring in-state

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. congenital heart disease) Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database collection and storage: Oracle, Web-based reporting system is linked to electronic birth certificate and populates Oracle data tables

Data Analysis Data analysis software: SAS Quality assurance: Validity checks Data use and analysis: Public health program evaluation, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Needs assessment, Referral, Grant proposals, Education/public awareness

System integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: VaCARES is part of the Virginia Vital Events Screening and Tracking System, which also houses electronic birth certificate reporting and the Virginia Early Hearing Detection and Intervention tracking.

Funding Funding source: 70% MCH funds, 30% Genetic screening revenues Web site: http://www.vdh.virginia.gov/ofhs/childandfamily/childhealth/gns/vacares.htm Contacts Kathleen Moline, RN, BSN, MA Virginia Department of Health 109 Governor Street Richmond, VA 23219 Phone: 804-864-7712 Fax: 804-864-7807 E-mail: [email protected] Sara Varner, BA, MPH Virginia Department of Health 109 Governor Street Richmond, VA 23219 Phone: 804-864-7012 E-mail: [email protected]



Washington

Washington State Birth Defects Surveillance System (BDSS)

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Universities Program status: Currently collecting data Earliest year of available data: 1987 Organizational location: Department of Health (Office of Healthy Communities) Population covered annually: 86,000 Statewide: Yes Current legislation or rule: Notifiable Conditions: WAC 246-01 Legislation year enacted: 2000

Case Definition Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: We ascertain cases through 1 year of age for structural defects and to age 10 for FAS/FAE, Cerebral Palsy and Autism Residence: Resident births; children born, diagnosed, or treated in-state

Surveillance Methods Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index Other sources: University-based FAS/FAE and Autism specialty centers Case Ascertainment Coding: ICD-9-CM, FAS/FAE coding scheme will be utilized in data collection and case description for FAS/FAE cases

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.) Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Case-finding Log listing of all data elements required for each case are completed by Medical Records staff, sometimes in conjunction with hospital Information Systems staff. Several facilities submit print-outs from data query of internal system of discharge data. Minimal use of diskette or other forms of electronic data transfer. A web-based reporting system is currently in development. Database collection and storage: Web-based SQL server

Data Analysis Data analysis software: SAS, Stata Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Education/public awareness

System integration System links: Link case finding data to final birth file, CSHCN program participant file

Funding Funding source: 30% General state funds, 70% MCH funds Contacts Kevin Beck, MA Washington Dept. of Health PO Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3492 Fax: 360-236-2323 E-mail: [email protected] Riley Peters, PhD Washington Dept. of Health; Maternal and Child Health; CSHCN PO Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3581 Fax: 360-236-2323 E-mail: [email protected]



West Virginia

West Virginia Birth Defects Surveillance System

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1989 Earliest year of available data: 1989 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 21,000 Statewide: Yes Current legislation or rule: WV State Code 16-5-12a Legislation year enacted: 1991; updated 2002

Case Definition Outcomes covered: ICD-9-CM codes 740-759, 760, 764, 765, 766 Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (20 weeks gestation and greater) Age: 0-6 years Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Infant Mortality Review Team Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries Other sources: Pediatric referrals of children not identified on birth certificate

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation ( <2500 grams or <37 weeks), All stillborn infants, All neonatal deaths, All elective abortions, All infants in NICU or special care nursery Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Developmental delay, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Ocular conditions, Auditory/hearing conditions, Any infant with a codable defectcodable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Prenatal diagnostic information, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access

Data Analysis Data analysis software: Access Quality assurance: Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects


Funding Funding source: 100% MCH funds Other Web site: http://wvdhhr.org/omcfh Contacts Kathy Cummons, MSW Research, Evaluation and Planning Division 350 Capitol St. Room 427 Charleston, WV 25301 Phone: 304-558-5388 Fax: 304-558-3510 E-mail: [email protected] Melissa A. Baker, MA Office of Maternal, Child and Family Health 350 Capitol St. Room 427 Charleston, WV 25301 Phone: 304-356-4438 Fax: 304-558-3510 E-mail: [email protected]



Wisconsin

Wisconsin Birth Defect Prevention and Surveillance System (WBDPSS)

Purpose: Surveillance, Research, Referral to Services Partner: Partners: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2004 Earliest year of available data: 2005 Organizational location: Division of Public Health Services Statewide: Yes Current legislation or rule: State statute 253.12 Birth defect prevention and surveillance system. Enacted December 2000. Department of Health Services rules, Chapter DHS 116 Wisconsin Birth Defect Prevention and Surveillance System. Enacted April 2003. Legislation year enacted: 2000

Case Definition Outcomes covered: A list of 87 specific birth defects are collected. The list may be viewed on our website at http://www.dhs.wisconsin.gov/health/children/birthdefects/index.htm. It is an appendix to the reporting form DPH 40054. The list was developed by the Scientific Committee of the Council on Birth Defect Prevention and Surveillance and is included as an appendix in the rules. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 2 years after delivery Residence: All children born in and/or receiving services in the state

Surveillance Methods Case ascertainment: Passive case-finding without case confirmation, Work with reporters who report batches from EMRs to assure reporting quality Vital Records: Matched birth/death file, compare registry reports to vital records periodically for selected birth defects Case Ascertainment Coding: ICD-9-CM, State assigned codes assigned to all conditions collected. Reporters combine ICD-9-CM or ICD-10 with text searches to derive defects that share an ICD code.


measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agnecies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Can submit one report on the website or upload multiple reports. A paper form is also available that is entered by state birth defects staff. Database collection and storage: Oracle

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Referral, Grant proposals, Prevention projects

Funding Funding source: 70% Service fees, 30% Other federal funding (non-CDC grants) Web site: http://www.dhs.wisconsin.gov/health/children/birthdefects/index.htm Surveillance reports on file: Posted on the website Contacts Elizabeth Oftedahl, MPH Wisconsin Department of Health Services, Division of Public Health 1 W Wilson St Madison, WI 53703 Phone: 608-261-9304 Fax: 608-267-3824 E-mail: [email protected] Peggy Helm-Quest, MSEd, MHA-PH Wisconsin Department of Health Services, Division of Public Health 1 W Wilson St Madison, WI 53703 Phone: 608-267-2945 Fax: 608-267-3824 E-mail: [email protected]



Wyoming

Program status: Interested in developing a surveillance program Comments: Wyoming plans to use SSDI funds to compile a Birth Defects Surveillance plan Contacts Amy Spieker, MPH Wyoming Department of Health 6101 Yellowstone Rd, Ste 420 Cheyenne, WY 82002 Phone: 307-777-5769 Fax: 307-777-8687 E-mail: [email protected] Ashley Busacker, PhD CDC/WDH 6101 Yellowstone Rd, Ste 510 Cheyenne, WY 82002 Phone: 307-777-6936 E-mail: [email protected]



Department of Defense

United States Department of Defense (DoD) Birth and Infant Health Registry

Purpose: Surveillance, Research Partner: Hospitals, Universities, Other DoD Programs Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Deployment Health Research Department, Naval Health Research Center Population covered annually: Approximately 100,000 per year Statewide: No, National/Worldwide; includes all DoD beneficiaries Current legislation or rule: Assistant Secretary of Defense, Health Affairs Policy Memorandum Legislation year enacted: 1998

Case Definition Outcomes covered: Outcomes include those birth defects listed in the case definition of the National Birth Defects Prevention Network. For a birth defect to be represented, the diagnosis must appear at least once in an inpatient record, or at least twice on two separate dates for outpatient encounters. Same sex multiples are excluded from analysis. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Birth up to one year after delivery Residence: Worldwide; any birth to a US military beneficiary

Surveillance Methods Case ascertainment: Active Case Finding, Passive case-finding with case confirmation, Passive case-finding without case confirmation, Electronic diagnostic codes from all inpatient and outpatient healthcare encounters of US military beneficiaries Delivery Hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, All inpatient and outpatient encounters are captured in standardized DoD data Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, All inpatient and outpatient encounters are captured in standardized DoD data Third party payers: All inpatient and outpatient encounters are captured in standardized DoD data Other sources: Validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military facilities

Case Ascertainment Conditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military healthcare facilities Conditions warranting chart review beyond the newborn period: Any infant with a codable defect Coding: ICD-9-CM


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions

Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database collection and storage: Access, SAS

Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Prevention projects, Monitor birth defect outcomes following specific parental or gestational exposures of concern

System integration System links: DoD databases System integration: DoD databases

Funding Funding source: 100% Other federal funding (non-CDC grants) Other Web site: http://www.med.navy.mil/sites/nhrc Surveillance reports on file: DoD/Health Affairs policy memorandum; annual reports Contacts Ava Marie S. Conlin, DO, MPH Deployment Health Research Department, Dept 164, Naval Health Research Center 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-417-9614 Fax: 619-767-4806 E-mail: [email protected] Gia R. Gumbs, MPH DoD Birth and Infant Health Registry 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-553-9255 Fax: 619-767-4806 E-mail: [email protected]



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